Aware

Today is Autism Awareness Day. You’d think that every day around our house would be Autism Awareness Day, but, strangely, that’s not really the case. We’re all so used to James that most of the time, he’s just another member of the family, not “the one with autism.” So, just as we know to keep an eye on Maddux if she’s arisen before 6 a.m., not to put condiments on Thomas’ food and not to change Henry’s diaper without occupying his hands with a toy, we know not to ask James to wear jeans or surprise him with a hug.

When we go out in public, though, we’re forced to see James through other people’s eyes — and that’s where awareness comes in.¬† Last Monday, James attended his first “big kid” karate class. There’s a lot of rapid-fire instruction. There’s an assumption of basic physical coordination. James has trouble processing complex instructions, and his body becomes stiff and awkward when he’s trying out new movements. Last week, he seemed utterly lost until the sensei assigned a specific instructor to guide him through all the motions as if James was a gangly little marionette with one hand jammed permanently in his mouth (a sure sign he’s nervous).

But this Monday, when we arrived at karate, it was completely different. Halfway through the class, James figured out the connection between the verbal commands and the karate stances, and, while he appeared to be on a two-second delay, he put all his concentration on trying to keep up with his classmates. He only had to be posed a dozen times (instead of constantly for the full hour) and even landed a kick or two on the paddles. Performance-wise, he still trailed the other kids, but effort-wise, it was obvious James was giving karate his all. In sports, the end result matters a lot — a kid who struggles just to participate can get lost in the shuffle. But to my amazement and pride, when James and Maddux piled into the car, Maddux announced, brimming with glee, that James had been named “Hardest Worker,” a weekly honor which she greatly covets. So often, people don’t notice all the hard work James puts into what he calls “not being weird.” The fact that someone else who barely knew James noticed him giving his level best and rewarded his efforts — rather than comparing his achievements — nearly brought me to tears in the parking lot of the Y.

We still get stares at parks and grocery stores, and sometimes from other parents at school or activities. But, thanks to the growing awareness of Austism Spectrum Disorder, there are so many people who see James as a person rather than a set of weird behaviors and social differences.

Thanks to his kind, cheerful, insanely patient speech therapist from two years ago, who tailored the therapy to James’ specific needs (even though he was only there for speech) and made it possible for him to have meaningful conversations with people, observe their facial expressions and identify emotions in himself and others.

Thanks to those rare, wonderful children who are compassionate to the “different” kids rather than taking advantage of their deficits in social awareness. James may not understand other kids’ emotions in a specific moment, but he does understand acceptance and rejection. Rejection happens a lot, because kids are kids. And when James has been accepted on play dates, invited to birthday parties and been high-fived and called a “rock star”, he’s spent the next several days giddy with joy. Big thanks to the moms and dads of those children as well, because compassion is a learned behavior!

Thanks to James’ teacher, who’s been working with him since the beginning of the school year — four months before his official diagnosis. She’s developed rewards, reinforced our “breaks” and deep breathing, and worked with the resource teacher on a social-awareness curriculum, which the school kindly provided despite the non-diagnosis. We weren’t sure James would last a week in regular kindergarten. Yet here we are, with just three months to go before year’s end.

Thanks to the grandparents, aunts and uncles who shower James with love despite the meltdowns, some occasionally obnoxious behaviors and the uncertainty that he’ll reciprocate the hugs and “I love you”s — or even say “hi” if he’s busy with his Lego. He’s working on those hugs and gets better every time!

To Chris, who didn’t want to believe James was different but humored me when I demanded evaluations and doctor visits, and has been there both to console me when it’s been overwhelming and give me a reality check when I expect too much of James (how the tide has turned!).

It’s hard to say where kindness ends and “awareness” begins, but I like to think that a little bit of knowledge about neurological differences helps people process some of James’ quirks. I’m grateful to those who know about James’ differences and accommodate them. And I’m gobsmacked when perfect strangers overlook James’ deer-in-the-headlights expression and obvious speech differences and give him “kudos” in front of his classmates.

Yesterday I was surprised by the karate instructors’ perceptiveness and compassion. Today, I want to thank those of you who have made James feel like a regular kid, and ask those who stumbled on this blog somehow to do the same for a person with autism in your lives. These moments are few and far between, but when they happen, well, that’s the stuff that keeps us going!

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Kicking the paddle — his favorite part!

 

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Keeping up with the beginner class!

Shouting it from the mountaintop

Is it wrong that, two days after James’ diagnosis of autism spectrum disorder, I feel more relaxed and at peace than I have in about four years?

Ever since James was about 2, we’ve been on this long, hard uphill slog. And Friday was, in a word, wrenching. Our appointment with the assessment team and James’ teacher was scheduled for 12:30, so the morning was awful because I spent it with lead-stomached dread, terrified that, once again, James would fall just a hair below the mystical “diagnostic threshold.” Once again, he’d be labeled with multiple, rather fuzzy disorders rather than the single disorder that handily explains all his differences and provides a proven game plan for some sort of remediation. I was practically certain of this. All morning, I couldn’t eat a mouthful and my heart was galloping, despite my consumption of a single cup of coffee before noon.

Friday evening, although James received exactly the diagnosis we’d known he would ever since I noticed certain autistic traits four years ago, I was reeling with the grave finality of the words on his official diagnosis folder (yes, along with a diagnostic label, you receive an enormous folder full of information and therapy options. I’ve read maybe a third of it. It’s thick.). Even though I knew — KNEW — the team was wrong two years ago when they said he did not have a spectrum disorder — “merely” an expressive language disorder (not specified), anxiety disorder (not specified) and Oppositional Defiant Disorder — oh, and sensory issues, too — I apparently secretly harbored a faint glimmer of hope that the psychiatrist was right. That James had global delays from being premature, and that all he needed¬† was a bit of speech therapy and a few years of development and that, by age 8, everything would even out and he’d be like every other 8-year-old. That, as an adult, he’d have no problem living on his own and would have a job and a spouse and that when we died, there wouldn’t be a question of what would happen to James. Who wouldn’t want that?

Of course, when your child has spent hours (years, if you add it up) lining up toys and echoing your words back to you and having hourlong tantrums about his clothes, you know. Even when he makes great strides and now he’s just that weird kid whose conversations are a little non-sequitur-heavy and he punches his favorite classmate (not best friend, because he doesn’t have friends in the strict sense of the word) for tapping him on the shoulder from behind, you know. He is still the same kid he was two years ago, when he got the non-diagnosis, and four years ago when he screamed and wailed through music class because it interrupted his repetitive rolling of the wheels on his omnipresent toy school bus.

The psychiatrist who ran both assessments said that they had expected to see the gap between James and his peers narrow, but that it had widened instead. Which is great for James, because now he doesn’t fall short of this arbitrary threshold that for two years prevented him for qualifying for therapies, but also heartbreaking because it means that yes, he has a neurological difference, not a cluster of delays. And it means that we’ve missed four years of early interventions, no matter what the team said about James still being “young.” If he’d been diagnosed at 2, where would he be now?

I had always expected to feel a great sense of relief after James got a proper diagnosis (as anticipated, the psychiatrist called it PDD-NOS, which is hard to describe as it’s sort of a catch-all spectrum diagnosis, but in James’ case it basically means something like Asperger’s with a speech delay thrown in). Instead of feeling as though a weight had been lifted, on Friday, I simply felt numb and sad. It’s as though — as much as I raged against the non-diagnosis in 2010 — its predictions of normalcy had allowed just enough hope to prevent the grieving one might do if one had some sort of certainty.

Luckily, after a little time to digest what has been so evident for years, I’ve felt a sort of lightness yesterday and today. James is going to have an Individualized Education Program (IEP) and funding to be distributed both to his school and the therapy providers of our choosing. In his giant folder rests a hefty sheaf of info on support groups for parents and special-needs sports teams and programs for kids on the spectrum. And, while it shouldn’t matter (but does, to me), we now have the official paperwork to prove that no, our kid is not just a noisy spaz who didn’t respond to your kid’s random question because he’s been raised with no manners; he has a diagnosable disability so just stop glaring at him already.

It’s been an arduous journey full of tears, frustration, loneliness and not a little anger at the system, and now, it feels as I imagine it does when one reaches the summit of Everest and looks out to see the world at one’s feet. James is still the same James he was at 4 and at 2 and as a beautiful, tiny premie — sweetness and volatility, the most likely of our children both to punch you and to let you sleep with his stuffed bunny for 10 nights (no more, no less). And yet everything is different, because there will be help, a plan, an explanation. A new world is at his feet. And a new world’s at my feet, too, because finally, I can lay down the backpack and look at the view. The seemingly endless uphill trek is over. Time to rest and survey how far we’ve come. We’ll start climbing the next mountain soon enough.

Solo sports — James’ happy place

Breaking Bad

Ahhh, spring break! Remember spring break? When we were in college, it was a time to go skiing or party at the beach, or perhaps to take advantage of the underage-drinking loophole in the great state of Louisiana.

Once you have kids, however, they have spring breaks of their own. And if you do go skiing or visit the beach, it is most certainly not a break for Mom and Dad — no matter how many tequila shooters you do. (Just kidding! I didn’t do any tequila shooters, because we have no tequila. Believe me, I checked.)

Because our children don’t travel well, we opted to stay sane home this year.

The week began promisingly enough. The kindergarten’s class mom organized a series of group playdates, with the first at one of our favorite local parks. The kids did a fantastic job of not being complete hooligans, and nobody had to have a time-out in the stroller. I started the next day with a 6 a.m. workout and a coffee, confident that this spring break would be different. It would be exciting! Productive! Or at least somewhat less insane, and I would not spend days on end in my pajamas, binge-eating tortilla chips and counting down the hours.

Right now, James is in a contrary phase. Well, the contrary phase has technically lasted about a year and a half, but right now he’s in a particularly contrary phase. So we’ve been trying to keep him out of the other kids’ hair on difficult days. Our innovative strategy has involved lots of Scooby Doo in Daddy’s office.

However, seeing as how Daddy is the sole wage earner, sometimes James had to mingle with the other children. Occasionally, the mingling involved insisting that everyone watch his favorite episode of Scooby Doo. Other times, it involved throwing a blanket over his head and volunteering for a beatdown (a.k.a. “ghost wrestling”). But this is how several hours of each day went:

James: “You can’t play with my Littlest Pet Shops!”

Maddux: That’s my Littlest Pet Shop, Jamesy! Stooooooooop!”

Me: “The Littlest Pet Shops are in time out now.”

Thomas (fending off James’ grabby hands): “Screeeeeeeeeeeeeeech!”

James: “I want that Percy train!”

Thomas (clubbing James over the head with Percy): “You no take my train!”

Me: “James, get in time out! Thomas, time out!”

Maddux: “Mommy, Jamesy’s not in his time out!”

James: “I … DON’T … WANNA … TIME … OOOOUUUUUT!”

Mommy: “And Scooby Doo is going off the TV now.”

James: “Mommy, you’re a poo-poo-head robot.”

Thomas (escaping from time-out and dancing in the middle of the room with enormous cheesy grin): “Thomas poo-poo-head robot! AHAHAHHAAAHAAA!”

Me: “Sweet merciful crap. I need so much more coffee.”

And so were great amounts of coffee consumed.

Because a little crazy is never enough, I decided to undertake two spring break projects (three, if you count the Christmas tree, which is stripped of ornaments but still standing). The first undertaking, Thomas’ potty training, was a complete bust — unless letting a 2-year-old pee in Disney Cars underwear instead of Pull-Ups and then feeding him jelly beans for sitting fruitlessly on the potty constitutes success.

The second project was eliminating James’ nap.

I have tried many times to cut out the nap, but James tends to crash hard around 4 or 5 in the afternoon, after which point our adorable child might as well be a wild boar on methamphetamine. But after a nice, refreshing afternoon nap, James was staying up until 9 p.m., or, occasionally, 1:30 a.m., and acting like a meth-crazed wild boar in school.

If my child is going to race about growling and attacking people like some feral animal, I’d rather have it be at home than at school. So we stuck it out through two horrible, irrational days of meth-crazed wild-boar boy, and finally James started going to sleep at a civilized hour and acting human during the day. Success!

Until …

Somehow, a year or so ago, Maddux got it into her head that there is nothing cooler in all the world than — get this — a sleepover.

Raise your hand if you think this is a good idea. No one? Yeah, me neither.

But gut feelings aside, in 2009, on Christmas Eve, I agreed to sleep in Maddux’ room along with her and James. They were very excited, because we have a hard-and-fast rule that people sleep in their own rooms. (You know, so they can sleep.)

Maddux was bright-eyed and giggly at first, but she’s a morning lark rather than a night owl, so by 8:45 she was exhausted. James, however, chattered away nonstop about trains until 12:45 a.m. Maybe longer. I don’t know, because I fell asleep. Then Maddux woke everyone at 6.

I swore it would never happen again.

But somehow, the kids finagled another sleepover during winter break. This time, I was smart enough not to try to sleep in the room with them. Not so smart, however, was Maddi’s decision to wake James at 9 p.m. because he was drooling. Having been completely reinvigorated by his 20-minute nap, James stayed up into the wee hours and the sleepover was aborted. Apparently, though, in my half-asleep delirium, I promised the children that they would get a second chance over spring break.

Let me make it clear that neither do I remember making any such promise nor do I find it plausible that I would have done so. Nevertheless, I let the little ones have another sleepover. (Well, once I found them entrenched under Maddux’ bunk bed at 8:45 p.m. surrounded by everything James has ever owned and looking up at me with their most plaintive saucer eyes, anyway.) They were asleep by 10, but the next day, James was so tired he had a nap. As the kids say, facepalm.

Add to all that a shopping trip on the penultimate day of spring break, which — in addition to the usual mirror-licking, begging for everything in a 5-meter radius by Maddux, rejection of any and all new clothing by James, and throwing of decorative rocks in fancy stores — also included the improper use of the stroller as some sort of MMA fighting cage on wheels.

Corn chips — check.
Pajamas — check.
Tequila shooters — checked. Couldn’t find tequila, settled for Riesling.

The only thing breaking this spring was my sanity.

The Kid’s Speech

James has spent most of his life being different from other kids in myriad ways. When he was smaller, many activities left him overstimulated, screaming and clinging to his favorite die-cast toy bus. Things such as jackets, new shoes and his bed being placed a quarter-inch “off” resulted in 45-minute meltdowns. He didn’t really seem to understand or care about what people were saying. But the thing that stood out most about James was his speech.

Until he was a bit older than 3, James hardly ever put more than two words together. When he did speak, it was usually during his bedtime story, when he would expertly parrot exactly what I was reading, as if on a two-second delay. Once he learned to express himself, he compulsively said the last consonant of most words three times. (Example: “Maddux-x-x wearin-n-n’ pants-s-s.”)

Last spring, he had a speech evaluation. Predictably, he was referred for speech therapy, although the waitlist was many months long — in fact, we still have not been called in for speech or occupational therapy.

I’m not really fond of waiting. (Shocking, I know.) So I researched a few approaches and decided on Stanley Greenspan’s Floortime model. In Floortime, you begin by simply observing how the child plays, then engage in parallel play with the child. Once you’ve tricked your poor, unsuspecting kid into letting you play with him, you encourage expressiveness and interaction. Soon, you can introduce directions and turn-taking.

Since I’m no therapist and playing with a bossy, tantrum-prone 4-year-old makes me need about a dozen tequila shooters frustrated, we’re still working on turn-taking and directions. With a lot of guidance, he can sort of play Hi-Ho Cherry-O. For about five minutes. But gone are the days when James lorded over his train table and beats interlopers about the head with Sir Handel.

A good chunk of James’ progress coincided with his entry to preschool. The Montessori curriculum depends a lot on routine, which James loves, and teaches independence, which James needs.

Not only is he improving socially, but we’ve noticed he can finally participate in a decent approximation of a conversation (providing he’s not over-tired, at which point any question will be answered with a defiant: “I DON’T WANNA [fill in the blank], YOU POO-POO ROBOT HEAD!”)

So great have been his strides that, this Wednesday, the woman who evaluated his speech last year was blown away.

A little less than a year ago, James’ speech was coming along, but he mostly echoed others or narrated rather than actually interacting. He had only just begun pointing to things when asked.

This year, he used excellent eye contact (to be fair, he’s always done this), engaged the evaluator, participated appropriately in adult-led play, and when the evaluator dumped 10 blocks on the table, he told her, “You take these four and I’ll take these six,” almost before they were out of the box. (Although now that I think of it, didn’t Dustin Hoffman’s character in “Rain Man” do that with toothpicks? Hmm, maybe that’s a poor example.)

James has gone from being a kid with unintelligible speech, consisting mostly of echolalia, to being able to identify all his colors, numbers and phonics sounds. He identified the crying baby among the happy babies in the evaluator’s flip-chart — a big deal considering his preliminary diagnosis of PDD-NOS in October.

At the end, the evaluator said he has very few red flags for autism, speech-wise. There are still issues for the pediatrician, such as his spells of absence and the outrageous tantrums and the pants-pooping and the fact that he sometimes stays up ’til 1:30 a.m. But the good (bad?) news is, he probably no longer needs the speech therapy he was referred for and still hasn’t gotten. Yay. (Pardon me if I’m a bit bitter about the slow access to autism-related services after nearly three years of trying to get help for James.)

Cognitively, James is at or above age level. Speechwise, he’s just the tiniest bit behind his peers. We just need to work on talking about abstract ideas.

And that poo-poo robot head thing.

Who has two thumbs and can (sometimes) smile for the camera? This guy!

Coat of Conduct

First off: Sorry, everyone, for not posting for the past six months or so. Owing to some personal matters (OK, a miscarriage, since I hate cryptic allusions to mystery crises in other people’s online communication, but PLEASE let us never speak of it again even if it’s just to tell me you’re sorry!) I just couldn’t bring myself to write blog posts for awhile. But now I’m back and ready to update you on all the boogers and poops of my so-adorable children.

Those of you who have read my blog will doubtless remember the School Pants Debacle. If not, let me fill you in. James needed two pairs of navy slacks for preschool last spring, which meant we had to try them on in a fitting room. For some reason, the stroller did not make it to the mall with us. The resultant 900-decibel tantrum by James and gleeful prison break by Thomas earned us some amount of notoriety at The Children’s Place — nay, at the very mall itself. The School Pants Debacle is the shopping disaster by which all shopping disasters are measured in our family.

Now, you may be asking yourself, “What does James hate more than school pants?”

“Nothing” is not the right answer.

Had you been there at the Big White Ski Resort Debacle, you would know that the correct answer is “jackets.” James’ hatred for parkas, coats, anoraks, hoodies, blazers, windbreakers, and anything else that goes over one’s clothes and fastens in front is so intense that we have what I call The Negative Twenty Rule. If it is above negative 20, he may wear his shirtsleeves, since at these temperatures, the jacket plus the tantrum would provide the heat necessary for our son to spontaneously ignite. If it is below negative 20, he is forced to wear his coat and the rest of us are forced to listen to his No. 1 hit single, “I-no-wear-my-jacket-no-no-no-no-no-no-Mommy-no-jacket-aaaahhhhhh-ahhhhhhhh-ahhhhhhhhhhggghhhhhh!”

His size 2 jacket was a great jacket. He wore it for two whole years, or about four times. But alas, he is no longer a size 2. And what’s worse than a jacket? Why, a new jacket, of course. James finds any new clothes disturbing. Even the new shoes he picked out himself for PE class, after much explanation about how he had to have clean new shoes to use in the gym, were the focus of a major meltdown the first day he had to wear them. So, as the weather has grown colder over the past month, I’ve been trying to warm him up to the idea of a new jacket.

“Boy, it’s chilly this morning,” I would say. “Look, your friend Andrew is wearing a jacket today.”

“Andrew’s wearing a jacket today,” James smiled back.

“Pretty soon, it will be time for you to wear YOUR jacket,” I commented cheerfully.

“I DON’T WANNA WEAR NO JACKET, MOMMY!”

“You can pick it out yourself.”

“NOOOOOOOO JACKET!”

“You can choose whichever one you like, James” I continued (mentally adding, “As long as it’s 50 percent off,” because that’s how I roll).

This conversation happened about five times, and the protests became quieter and less adamant each time. This week, since James was the only kid at school without a jacket and there was a sale at Please Mum (although, sadly, only 30 percent off), Chris and I toted the boys to the dreaded mall.

Yet again, we didn’t have the stroller, but it never hurts to have a big burly dad along to scoop up errant tots. Did I mention it was already naptime? So we had errant tots aplenty.

James and Thomas have not been shopping at the mall in quite some time (not least because I’m terrified we’ll be recognized at The Children’s Place), so they ran happily amok among the clothing while Chris and I looked for boys’ jackets in 4T.

“James, what jacket do you like best?” I asked.

“I don’t want a jacket!” he yelled in his robot voice, laughing and running in a circle around a rack with Thomas in pursuit.

“How about a blue one? Or this one with dragons? Or the cool dinosaurs?”

“A blue one!” James yelled without looking at the jackets.

We pulled a blue parka out for him.

“I don’t want that jacket!” he shouted, bug-eyed.

Then he picked out the same jacket, but in a much smaller size.

“OK, James, let’s try it on,” I said as Chris swapped the 3T for the 18 month.

“NOOOOO! I want THAT one!” James roared, pointing at a plaid number in a bid to delay wearing the dreaded jacket.

Unfortunately for James, the plaid jacket was also available in a 3.

I tried to make a game out of trying it on, putting my hand through the sleeve and tickling at him, but he was having none of it. He squirmed away from the jacket like a greased hog at the county fair. He flung himself on the ground and dared me to shove his limbs into the coat, as the world’s most annoying salesgirl hovered asking if she could help. (“Why yes, you may. Do you have any tranquilizer guns on hand?”) I knew I had to pull out the heavy artillery.

“James, if you try this jacket on, I will give you jelly beans in the car.”

“NO.”

“I will give you a LOT of jelly beans, James.” (I’m not great at bribery.)

Then, in a flash of brilliance, Chris remembered that we had just bought some Rockets (or Smarties, in the states) for me to eat on the ride home trick-or-treaters.

And grudgingly, with tears in his little bug-eyes and his brow all furrowed with anguish, James agreed to let me stuff him into his new jacket and zip it up.

And for all that, it was this close to being too small. We needed to try the next size up. But James had tried on his limit. He was done.

“James, I will give you TWICE AS MUCH CANDY!” I said brightly.

James made a noise that can only be described as The Angry Robot and bolted. We bought the 4T assuming that if it didn’t fit yet, it would soon enough. Better that than a fresh debacle.

So, crisis averted with only a little bit of crying instead of the entire mall being alerted to James’ hatred for outerwear, we made our purchase and left the store with, if not ALL our dignity intact, at least some of it. (Chris, of course, was traumatized by the shopping trip and thinks I’m crazy for pronouncing it a success. Shopping with kids for Chris is like a winter coat is for James.)

Coming soon(?): James wearing his winter coat. (Please, please let him wear it without covering the western half of Canada in snot.)

A Tale of Two Beds

It was the best of times, it was the worst of times; it was the age of wisdom, it was the age of foolishness; we were on the path to big-boyhood, we were all on the fast track to crazy.

As my children one day look back on a childhood that will — regardless of how they are raised — likely be regarded as Dickensian (although in fairness, they are always welcome to as much gruel as they like), one of the great tragedies that stand out will be the tale of James’ two beds.

Tragic for James simply because he was expected to move to a new bed. Tragic for Thomas because he had to wait more than a year to get his long-awaited toddler bed. And tragic for the rest of us because bedtime comes at the end of the day and we prefer sleep to prolonged, hysterical tantrums.

When we moved into this house at the beginning of last July, we placed the big-boy bed in James’ room, right across from the toddler bed, hoping its presence would entice James to one day crawl into it. We decked it out in Diego sheets and made a big to-do about how cool it was. Months passed, and James was happy to play on the new bed, but still crawled into his toddler bed to sleep.

“James,” I told him on several occasions, “Tonight you are going to start sleeping in the big-boy bed.”

I placed all his special toys in the right parts of the bed, and covered him up with his special blanket.

“Good-night,” I would say. It was then, as I tucked him in, that James invariably leapt from the bed, pulling all his toys with him.

“I sleep in my little bed!” he insisted. “I can’t sleep in the Diego bed!”

One night, I removed the sheets from his toddler bed before this familiar routine. James was undeterred. He tackled the bare mattress, blanket in hand, crying, “I sleep in my Thomas Train bed!”

“Would you sleep in your big-boy bed if we put Thomas Train sheets on it?” I asked him.

“No, I sleep in my little bed,” he wailed. “I not big, I just a little boy.”

This was true. He was barely 3 at this point, and being screened for autism to boot. Since Thomas was (and is) perfectly happy to sleep in his crib, James remained in the little bed.

Weeks passed. Months passed. And this month, I realized we were halfway through summer vacation, and that my next chance to break him of his toddler bed without adding to his stress would be next summer — when he’s 4-and-a-half and Thomas himself is nearly too old for the toddler bed.

So I began telling James, “Very soon, you will start sleeping in your Diego bed. Thomas is a big boy now and needs the little bed.”

James tried to reason with me.

“Thomas not a big boy,” he’d say. “He a baby. Thomas sleep in the crib.”

“Thomas can’t sleep in the crib, James. He might climb out and break his head.”

“Thomas can sleep in my little bed, and I sleep with him.”

“Your bed is too little for two boys. You will sleep in your Diego bed.”

“I can’t sleep in the Diego bed! Thomas sleep in his crib!”

And so on.

But yesterday, when we had the conversation at naptime, James suddenly said, “I sleep in my Diego bed today.”

He ended up sleeping in the toddler bed again, but tonight, Chris and I stripped his toddler bed and moved it into Thomas’ room. Out of sight, out of mind.

James hopped calmly — even happily — into the big-boy bed, where all his special cars and stuffies were waiting for him. He insisted that I play cars with him for an inordinately long time, and requested not just his lullabye but three Christmas songs. But when I tucked him in, he stayed. And shouted “Sweet dreams, Mommy!” as I shut the door.

I have been known to cry at bedtime — usually from sheer frustration. It’s nice to shed a happy tear, for a change.

Not a single thump or shriek has been heard from James’ room in the two hours since I tucked him in.

Tonight I rest. And tomorrow, Thomas gets the long-anticipated toddler bed. Unlike the yearlong saga of James’ big-boy bed, however, we’re pretty sure how that one will go over.

Mom Goggles

When I was a kid, there was a girl named Kristina who lived down the street. She was a thug and a bully, and at the age of 9 she pronounced the word ambulance, “ambucklance.” But her mom (a teacher) insisted to all and sundry that Kristina was a gifted and wonderful child who would never lie, brawl or harrass smaller children. Because, as parents, we are quick to see the best in our children and are often blind to potential problem areas.

As a kid, I thought Kristina’s mom was either evil or a complete idiot — or maybe both. But now, as a parent who tries to be realistic about my kids’ strengths and weaknesses yet often finds her perceptions failing to jibe with reality, I can view that deluded neighborhood mom’s situation with a little more empathy. She was just seeing her child through “mom goggles.”

We’ve known for awhile that James is not like other 3-year-olds. We knew he wasn’t like other 2-year-olds, and before that, other 18-month-0lds. He lost speech and lined up toys. He filled his excavator buckets with spit bubbles for what seemed like hours. He refused to wear a jacket even at -20 degrees. He was so late learning to walk that we nearly consulted a doctor about it, and when he did learn, he split his face open on a regular basis because he never put his hands out to catch himself. Yet he was always doing just enough to get a passing grade on the developmental checklists.

When he finally began speaking sentences regularly, around 2-and-a-half, his speech was repetitive, loud and monotonous. Often, when asked a question, he’d just state it back to us. There were meltdowns — not just toddler tantrums, but panick-stricken, I’m-going-to-die-imminently meltdowns — based around clothing, shoes, new situations, dirt, grass, you name it. I resolved that if our doctor did not agree to refer James for an autism assessment at his 3-year checkup, I would find a new doctor.

Of course, developmental delays and neurological differences are much easier to spot in a 3-year-old than in a prematurely born 18-month-old. James was immediately given a referral for an assessment. Unfortunately, the referral was to the most popular pediatrician in the area, who seems to be on vacation all the time. His office staff got back to my doctor’s receptionist last month, a mere four-and-a-half months after the initial call, and told her there was a year’s wait. And then, after the year’s wait, he might be referred to yet another doctor. (Austism experts are in such high demand, both in Canada and the States, that this will be a familiar refrain for parents dealing with autistic spectrum disorders.)

So now we’re going to a new, less-popular pediatrician, and have an appointment for later this month. My doctor’s superstar receptionist has been calling everywhere on James’ behalf, and discovered that the second doctor we’d eventually see would likely send James to a special network that refers kids to all kinds of early-intervention programs (after the two years of jumping through hoops, of course!). So she had our doctor refer James himself, saving us the two-year wait for a referral to the program.

Not one to sit on my hands and wait for my little boy to age out of the early-childhood programs, however, I had also contacted the Ministry of Children and Family Development, which provides assessments for kids who show signs of developmental and neurological disorders. And, pretty much the moment I hit “save” on James’ online form, we got a call from the woman who screens children for autism, telling us that James sounded as if he needed early intervention and that since there was a wait for preschool-age children and he’d been premature, that he could get an open spot in their infant program (which goes to age 3). All we had to do was go in and let her meet with James.

Normally, when you introduce your kids to people, these are the thoughts that run through your head:
“I hope he doesn’t have a tantrum.”
“I hope she is polite.”
“Please don’t let him punch her in the throat when she tries to shake his hand.”

But when you’re taking a kid in for an autism assessment — a kid whose preschool teacher has suggested applying for a classroom aide because his social skills and motor coordination aren’t even close to that of your average preschooler — you just hope she sees what you and those close to your child see. (Especially after a year and a half of being told “It’s just too soon to tell whether this is autism or delays caused by being premature.”)

And even as I brought him in, there was always the lurking suspicion that my little boy was so high on the spectrum that his autistic traits might be dismissed with a wave of the hand.

“Oh, your child is a little odd,” I imagined the evaluator saying, “But we don’t really see anything alarming — nothing that would prevent him from, say, graduating summa cum laude from Harvard and running a wildly successful business and marrying an astrophysicist supermodel.”

Yesterday was our appointment. I canceled the gym and we headed out with the kids. Chris had volunteered to drop us off so I wouldn’t get lost in the jumble of one-way streets downtown, and he took the other kids to pick up Timbits while James and I visited with the early-intervention clinician.

After a terrifying elevator ride (for which I forgot to prepare James), we entered the office and met with the assessor. I filled out questionnaire after questionnaire, while James found a basket of vehicles and immediately retrieved the sole digger.

In autism-speak, diggers and other heavy equipment are something on which he “perseverates,” meaning that he is completely obsessed with them.

“Well, he doesn’t have any problem with eye contact,” the assessor noted cheerfully. My heart sank. James is always smiling and making eye contact, and despite having so many other traits that would almost certainly put him on the spectrum, he is not discernably different until you try to have a conversation with him.

James played with vehicles and helicopters the entire time. Except when he noticed dirt on the floor. Then he carefully scooped up every stray piece of sand from beneath the clinician’s sand-play table and helpfully deposited it in her hands.

“Now THAT,” she told me with a wry smile, “Is not developmentally appropriate. At 3, we expect children to be using a little broom or suggesting a vacuum.”

And indeed, it occurred to me that, when she was 2, Maddux had begged for cleaning supplies for Christmas. And that she hadn’t handed me dirt since she was about 14 months old. Even Thomas doesn’t hand me dirt. I felt a little more validated in my concerns about James.

Then the screener took a quick look at one the forms I’d filled out.

“Well, James’ lifetime Social Communication Questionnaire got a score of 25,” she told me. “Anything above a 10, we recommend an evaluation — and 15 is the cutoff for autism. This isn’t a diagnosis, just a preliminary assessment, but James definitely meets the criteria.”

Even though I had known he would easily meet the cutoff, my heart dropped into my stomach. In my motherly disconnect from reality, I had still grossly underestimated the amount by which he’d blow the cutoff out of the water. This wasn’t an Asperger Syndrome score. This might be closer to an adult-daycare score. The rest of the meeting was a blur as I filled out yet more forms for seemingly every early-intervention program and tool in the province’s arsenal.

All I could think as we finished the visit was, “How could I have ever doubted there might be something really amiss?”

The clinician must have noticed my numb expression, because she leaned over and said reassuringly, “Don’t worry. This is his lifetime score, not his current score. He’s obviously come a long way in the last little while, which is a really positive sign — and the early intervention will help.”

So, we still have no official diagnosis in hand, and won’t for at least a month or so. But James is now in the queue for physical therapy, occupational therapy, speech therapy and a host of other services available for children with autistic spectrum disorders.

I feel relieved and validated on the one hand, because my instincts were not wrong — James is a child who requires a little extra help in many areas, and now he will be able to get it. On the other hand, I feel foolish for thinking it was possible my son’s case was so mild that he could fall through the diagnostic cracks.

OF COURSE a 3-year-old should not be screaming blue murder for a half-hour at the prospect of wearing school clothes. OF COURSE it’s abnormal for a kid to spend an entire naptime creating an impressive tower of spit bubbles at the foot of his bed. OF COURSE it’s not too much to expect to be able to have a real conversation with your average preschooler.

I’m so used to looking at James through “mom goggles” that it’s difficult for me to accept how very unlike other children his age he actually is. While they are impressing the teacher with their phonics knowledge, James is running away from proffered handshakes (or worse yet, doing his signature throat-jab). He won’t hold a pencil. He sits backward at rectangle time. And despite repeated admonitions, he doesn’t see why oscillating his hips like a sprinkler while he pees is not as amusing to his parents and teachers as it is to him.

So now I’ve had to take the “mom goggles” off and gain some realistic perspective on James’ development. Don’t get me wrong. I’m not going to join the fund-raising pity party at Autism Speaks and tell everyone how my child makes me want to drive off a bridge and has Ruined My Life. No matter what his challenges may be, James is a treasure rather than a burden. He’s the same sweet, sensitive, dry-humored, eager-to-please, dump-truck-loving boy he was two days ago. But in order to help him navigate school, and life in general, I need to acknowledge that he faces significant difficulties in certain situations, and that he will need at least a few accommodations and coping strategies in order to survive a world full of people who don’t share his particular neurological structure.

However, I will point out that, unlike that bratty neighbor girl, James has not yet told a deliberate lie, and he can pronounce ambulance at least as well as Kristina could.

Did I mention he REALLY LIKES construction vehicles?

Kiss and Tell

To some kids, being affectionate comes easily. Maddux, for instance, has been saying “I love you” since forever. And once Thomas mastered the high-five, he moved on to blowing kisses.

James, on the other hand, has been reluctant to come around. He was nearly 3 before he uttered the phrase “I love you” for the first time, and until last month, I was pretty sure he would never kiss anyone without a gun pressed to his temple.

But one night, as I was leaving his room after tucking him in, James proclaimed with a big smile, “Mommy, I give you kiss!”

Well, far be it from me to pass up this once-in-a-lifetime offer! I knelt down obligingly for a sloppy kiddo kiss.

Now, most kids will just pucker up and kiss their parents. But James is very meticulous about the whole thing. With his lips extended for maximum drooly contact, he roots around on my cheek for the perfect place to plant a wet one, breathing hotly in my ear all the while. Sometimes he unpuckers and re-puckers his lips just to make sure they’re in firing position.

Finally, once he has found the exact center of my cheek, he opens his mouth, checks it with his tongue just to make sure he’s right (this takes approximately 3 to 5 seconds, accompanied by yet more heavy breathing), and then, after all of this drooling and hot breath, he pulls his lips AWAY from the target cheek and makes a kissing noise in the air.

After this several-minute process, he is then ready to kiss the other cheek. (And heaven forbid that the kiss or his bedtime routine in general is interrupted — that requires that the whole process begin afresh.)

A few days into my now-nightly kiss routine with James, I noticed that while he was searching my cheek for the perfect place to lay a smooch on it, he was whispering something very quietly under his breath. Not wanting to jinx my new sloppy-goodnight-kiss routine, I didn’t ask my son what he was whispering.

Days turned into weeks. James was now asking for stories and new songs in addition to his insistence on covering my face in slobber and toothpaste-sweet baby breath. And still, I couldn’t quite make out his whispers.

Finally, tonight, he leaned toward me with sparking eyes and grabbed either side of my face with a chubby little hand.

“Come here, Mommy,” James smiled. “I kiss your little tongue.”

“You’re going to kiss my cheek?” (James is still a little confused about all the different parts of the face.)

“Yes,” James corrected himself. “I kiss your little chin.”

And then, as he leaned toward me, warm breath whispering those mysterious nothings once more as his drooly little mouth grazed my cheek, I just barely made out the words, “I don’t bite Mommy’s ears off.”

So maybe I can’t count on James to remind me constantly that he loves me, or to blow me kisses. But at least I can rest assured that he won’t be gnawing off my face, either. And I can’t say I’ve received that promise from the other two

Schooled

Last September, on the first day we brought Maddux to preschool, James refused to enter the door. You see, the last time we had visited the school, he’d been sitting in his stroller. So, naturally, it was to be assumed that if his feet touched the floor inside the school, they would disintegrate.

For a week, James would scream at the entrance to the school until he was carried across the threshold, and would persist with such vigor that he drained his sinuses and tear ducts in 5 minutes flat. After a week, he obliged me by dragging his feet very reluctantly into the school, but would wait anxiously outside the classroom — as if it were filled with high explosives — while I got his sister situated. Then he ran for the exit as fast as his little feet would carry him until, outside the school, he gulped in lungful after heaving lungful of freedom.

Finally, sometime approaching November, he decided it was safe to enter the classroom as long as he hovered in the doorway, ready to bolt at the first sign of … whatever. (The catalyst behind his shrieking dashes to freedom usually was a request by Maddux’ teacher for a handshake.)

But as weeks turned to months and months turned to seasons, James began venturing farther into the classroom and closer to the teacher. After a few holiday parties, he decided that perhaps the classroom floor was NOT covered in hot lava, after all. And sometimes, with a bit of prompting, he even agreed to shake hands with the teacher.

For a few months now, James has been prattling away about how he’s going to go to preschool and eat cheddar bunnies and play on the playground with Gabriella (an effervescent little girl who relentlessly chases and kisses him). All that stood in his way was potty training, which we did over spring break.

I will admit, in light of his previous track record of school-related freakouts, that I was a little nervous about his first day. Would he hit the teacher when she tried to guide his hand at name-writing time? Would he shake hands, or run away? Would he follow any classroom rules at all?

The preschool day started with an inauspicious tantrum. Those who know James are well aware that he will scream until his nose bleeds if he is made to wear a coat, even at -20. And I believe we’ve covered what happens when he has to try on new pants. So, think tornado siren, and triple the noise. Think 18-month-old at vaccinations, and triple the tears and snot. Throw in some kicking and flailing. That is how James felt about his school clothes.

“OK, Maddux, we’re going to school now,” I said casually. “James has decided to stay home with me and baby Thomas and have a nap.”

Still screaming, and streaming snot and tears, and trying to wrench his clothing off, James wailed, “I NOT STAY HOME. I go school and play on the big playground!”

All right, then.

A daycare helper held Thomas as I strong-armed James into his carseat and gave him a Wet One to wipe his snot, and away we went. Did I mention this tantrum occurred at the gym? Those daycare girls are saints!

Luckily, the tragedy of new clothing was swiftly forgotten (well, 45 minutes and two car rides later) and by the time we alighted from the SUV, James was trotting at top speed toward the entrance. With just a minor stop for a quick picture of an impatient James, we raced to the preschool classroom, where James immediately filled his personalized mug with water and opened his much-anticipated snack.

At long last!

Alas, in his haste to enjoy his snack, James neglected to use the toilet. (If we’re going to be frank, it was not so much neglected as flatly and angrily rejected.) As I was observing snacktime, James shrieked: “I go pee-pee!”

And go pee-pee James certainly did. His clothes were drenched to the socks and shoes. There was nothing left to put in the toilet. Oh, well. You can’t spell “preschool” without “p,” right? So, 15 minutes into his first day of preschool, James was changed into his backup outfit of jeans and long-sleeve T-shirt.

He returned to his table — and immediately spilled a very full mug of water right down his front.

I asked James, now damp from chest to knees, whether we should leave.

“No, I stay and eat my bunnies!” he insisted bravely. “I play on the big playground!”

And so we stayed. He unrolled a mat and took down a basket of blocks. Since he was in his last change of clothes and they were already wet, I made sure he used the toilet every half-hour. In all the peeing and water-spilling, we hadn’t written his name out, but I wasn’t going to mention that to his teacher. Rectangle time would be challenge enough, I figured.

But apparently, I’d underestimated James. One of two other new kids, a very spirited European boy who sat next to James, was running and bouncing about during rectangle time while James, against all odds, sat mostly in his spot. Facing away from the teacher and everyone else, mind you — but hey. It’s James. I was just happy he wasn’t squealing like a pig at slaughter. He even turned around halfway through and started participating in the story (only in preschool would students be asked to periodically scream at the top of their lungs … which is why I am not a preschool teacher).

At the end of rectangle, all the kids sat in a line on the floor, waiting to be dismissed. James, as usual, needed a little more guidance than most, but sat behind his new friend after some prompting.

It was then, at 3:15 p.m. — by which time he has usually already been napping for an hour — that I tried to put James’ backpack on him.

He screamed as if I were trying to strap a dynamite vest to his body, miraculously hurdled over three children despite his usual lack of anything resembling coordination, and blazed out the door and down the hall. I caught up to him at the heavy double doors at the front of his school and prodded him back to the classroom, where he opted to wait outside until his sister was dismissed, casting a wary eye upon the offending backpack.

As the teacher said good-bye to all her students, James sweetly shook her hand.

And then he trotted proudly out the door, deeming his school day a resounding success. And I had to say, considering the beginning of the school year, I agree.

James shares a table with one of his favorite classmates, Maddux

Mallbrats

There was a time when I enjoyed going to the mall. I would push my stroller through miles of air-conditioned, window-dressed bliss. No matter that my stroller didn’t fit in my favorite stores. No, it was treat enough to let my mind wander while my babies slept.

Then the babies got older. Old enough to get out of the stroller. Old enough to need to try on clothes. At risk of repeating myself, I now face a trip to the mall with about the same measure of delight as I might approach a shower at the Bates Motel.

But the kids need clothing every so often, and James generally needs plenty of advance warning before he is willing to wear new things. So, to the mall we went. Chris and I had agreed to go tomorrow, but while he was napping, I suddenly realized that I had plans tomorrow. (Had Chris been awake, sadly, he would have reminded me that these plans were for Thursday. Such is my life.) So, hurrying so as not to awaken Chris, and also because naptime for the children was fast approaching, I loaded the kids in the car and zoomed off to the mall. Leaving, in my garage, that extremely critical component in any trip to the mall: The stroller.

Ten minutes later, as I unloaded the children, I realized my mistake. In the horror movie that will be based on this post, some fictional character who is killed off early will interject, “It’s not too late to go back for the stroller!”

Sadly, there was no one present in real life to point out this fatal error in judgment, so into the mall we headed, the older children following me hand-in-hand, their preternatural cuteness foreshadowing our doom like one of those excessively sunny days on which, laughing and horsing about, ill-fated travelers head into Big Bad Nature in the aforementioned cinematic genre.

The failure to pack our trusty stroller was but the first in a series of ill-advised decisions in this most horrific of all mall debacles. At our particular mall, there are adorable little fire-truck strollers available for rent. However, because They Are Different From Ours, James refuses to ride in them without a screaming, snot-streaming, security-is-being-paged freakout, and therefore I did not opt to rent a mall stroller. Not a double stroller, for both boys, and tragically, not a single one for Thomas. (This is, perhaps, where the second ill-fated short-term character would have suggested that containing an 18-month-old while shopping might have been the smart thing to do.)

So, with my too-sweet big kids holding hands and (gigantic, increasingly heavy) toddler on a hip, I traversed about 50 meters through the mall to The Children’s Place, where thrifty mothers are guaranteed to find affordable navy slacks and white polos pretty much all year ’round. And indeed, there they were. Oh, it was almost too easy!

But I had to do it. I had to screw it all up by having James try things on. The third — and maybe stupidest — mistake of this complete horror show.

Now, if this had been Maddi at 3-and-change, she would have been delighted to strip down and dress up in an entire SERIES of outfits. All by herself, while I played with Thomas. She would then have insisted she try on and then purchase not only the selected articles, but everything else in sight. But James is not Maddi.

“James,” I began, as we headed for the fitting room, “We’re going to go try on your school pants to see whether you’re a 2 or a 3.”

“NO!” James screeched, unobligingly, eying the curtained room with caution.

“We will go into the change room and Mommy will take your jeans and shoes off. I will see how these pants look on you, and then you will get to wear your jeans and shoes again! It will be SO EASY!”

James glared.

“And THEN we will go to the PLAYGROUND!” I squealed in an amalgam of mock excitement and slight desperation.

“I NO WEAR DOZE PANTS!!!!!” James told the entire mall, and flung himself dramatically to the floor. I wanted to sink into the floor only the slightest bit at this point, because this is by no means the first time he has had a psychotic break in public.

“James,” I said faux-calmly, holding a wriggling Thomas in one arm while dragging my other son quickly behind the curtain by his armpits with my other, “This is not optional. You have to try on your pants so you can go to school with Maddux. If you let Mommy put these pants on you, you can go to the playground. Otherwise, you will go right home for a nap.”

“I no wear pants! I no go school! I no nap! I go playground!” James screamed at a volume that approached shattering The Children’s Place’s windows. He flailed and kicked as though he were fighting off an invisible squad of ninjas. I glanced around for bouncers, but apparently The Children’s Place has not found a need for muscle. Yet.

I uttered such helpful advice as “We don’t scream in stores, James. You are hurting people’s ears,” but apparently James had hurt his own ears so severely that he was now deaf, because he just kept thrashing and shrieking at top volume.

At this point, I was finding my weather-appropriate corduroy jacket extremely hot, and Thomas had somehow escaped my grasp, leaving behind a shoe. Where WAS Thomas?

“Thomas!!!” I yelled (as much as one can yell in a store without actually yelling, because James doesn’t need any encouragement in ignoring the “indoor voice” rule).

“He ‘scapeded, Mommy!” Maddux told me, wide-eyed. I noticed that James had somehow managed to crumple the pants and throw them under the curtain. And beyond the bottom of the curtain, Thomas, cackling with glee, had crawled off into the infants’ section and was playing chicken with a double stroller. (Apparently, he found his antics so hilarious that his laughter rendered him completely incapable of walking.) Maddux raced off to carry Thomas back, while I struggled to stuff a simultaneously limp and thrashing 32-pound boy into pants he didn’t want to wear.

(This is where, in the horror movie, the girl would look into the camera, snot dribbling down her face, and intone, “I’m SO SCARED!”)

So, with Maddux playing catch-and-release with the baby, who has gotten a taste of freedom and decided to go Braveheart on us, I played my own game of tug-of-war with James’ legs, stuffing one into a pant leg only to find that the other leg had come out of its pant leg … ad nauseam. James was as hot and red and sweaty and crazy as Jack Nicholson in the last half of “The Shining” at this point, and was losing his voice from his voluble protestations of the offending slacks. Tags were torn. Stickers were removed. Shoes and shirts were thrown. Playground privileges were indefinitely revoked.

Oddly, not only were mall cops not cuffing us and removing us from the premises, but nary a store clerk had intervened. And I suddenly realized that this was a horror movie that moms of boys everywhere could have starred in themselves. And that the salespeople in children’s stores have become completely desensitized to the sweaty, ear-splitting, mucus-producing thrashfest that is dressing a little boy who really doesn’t like new clothes. Oh, the humanity!

Miraculously, after what felt like hours of wrestling and bribing and threatening and playground-revoking and looking around for Thomas, I somehow managed to pull the offending pants up over his bottom.

“Put your feet on the ground, James,” I said, and was answered by more wailing and furious airborne bike-pedaling. No matter. Once he got tired of pedaling the invisible bike, I quickly ascertained that a 3 was way, WAY too big.

So we grabbed a 2. The same size I would have purchased had I not had James along for the fitting, because that is what he currently wears (slightly short though it may be).

Utterly defeated both as a mom and a human being, I scooped up my errant baby, put his shoe back on, smoothed my hair back from my now-drenched forehead, gathered up my precious little duckies and headed to the counter with my head as high as the legendary awfulness of James’ very recent tantrum would allow.

Nobody glared at us, so I’m guessing they had already finished their mental “What a horrible boy! And what a mess that mom was! Here’s what I would have done …” dialogue and now viewed us merely as objects of pity. Or maybe they thought, as I’ve occasionally been lucky enough to have the opportunity to think — when confronted with such rare, egregious misbehavior that it trumps the crimes of my own children — “Better her than me!”

The only comment came from the clerk ringing us up, who glanced at a cherubic Thomas (smiling, no doubt, in recollection of his many glorious games of stroller chicken) and said, “Well, you seem a lot happier now!”

“That was actually the 3-year-old,” I confessed, dying ever so slightly within.

Of course, as soon as he was clad in his familiar clothing and I told him how disappointed I was that he had screamed and yelled in the store, James had said, in a soft voice, “Sorry, Mommy.”

The Scourge of the Mall had been tamed … for now. But as with any horror movie, there’s always room for a sequel.