Je Crois Que la Vie est Belle

Ohhhh my oh my oh my. It’s been a while, no?

Nope, you aren’t imagining it; this blog seems to have fallen into a wide crevasse for a year or so. And yet – it lives! And honestly, I’ve missed you. (Aw…) I have though – and missed writing. So deeply. So how’s this: I’ll make amends by being prolific and fascinating from now on, and you can graciously accept apologies by stopping by once in a while.

A year. Don’t worry, I’m not going to insert the Christmas letter here. A good lot has happened, though, no question: I turned 40, Rob turned 40, and oh ya: I am now the mama  of two teenagers. Liam and Finn turned 13 earlier this month, and Rory is 8. We lost our beloved Ben last March, which was one of the saddest things we’ve ever gone through. It didn’t matter that he was nearly 14, and that we all knew it was coming. Don’t suppose it ever does.

Five months later, realizing that aside from missing Ben, we actually missed DOG, we started looking for a puppy. Lo and behold, the universe dropped Sam into our laps, and the rest is history. Also, he’s now too big for our laps. Sam deserves his own post though, so that’s going to have to wait.

There is an elephant in the room here (besides Sam) and it’s connected to my very last post from last Spring. We were going to Paris. Paris – the city of my waking and sleeping dreams since I was Rory’s age. And in spite of all the odds, we went.

Even if we’d never gone, the prospect of going, the planning and reading and dreaming and the tantalizing anticipation would still have been some of the best moments – months – I have ever spent.

Or rather, parts of months. At the same time as our departure date was getting closer, Liam’s struggles with anxiety and stress became worse and worse. It wasn’t exactly a surprise – for some reason, spring is always by far his hardest time of year. Every March, almost to the day, everything ramps up: temper, rage, fears, anxiety, desperation. Every year it happens, and every spring it’s worse than the last time. And last year it was awful. It was so bad he was hurting himself, and couldn’t leave the house without falling apart. It reached a terrible peak the weekend of the boys’ 12th birthdays, two weeks before we were supposed to fly to France. Candidly, if there had been an emergency room I could have taken him to on a Saturday night that would have known what to do with this poor boy, I would have taken him, and he would have gone. We were that desperate.

But we got through it, awfully, messily, and in the next six weeks two things happened: we started Liam on a new drug, and we found an insightful doctor at Sick Kids who spent a while with him, and pronounced a diagnosis of Asperger’s.

(Insert forehead slap here).

There are several things you might be thinking. 1) Didn’t he already have Asperger’s? A: No, that would be the other two. 2) How in the name of God could we not know he had Asperger’s when the other two have it, and we know more about it than most of the doctors? A: Ya. About that. Thing is, as the saying goes, “If you know one person with autism, you know one person with autism”. In retrospect, Liam TOTALLY fits some profiles of Asperger’s syndrome. But how the traits manifest themselves is different in every child, and for him, the anxiety was so absolute, so paramount, it sometimes obscured other issues. So there we were: three for three, and two of them with a Tourette’s diagnosis too. We’re pretty sure we could get a TS label for Finn, too, if it mattered, but it doesn’t.

Turns out the  medication Liam started has a record of working really well in kids with ASD and autism, and after 5 years of desperately trying with no success for any relief at all for him, it looks like we’ve found a match.

And while the meds didn’t work that fast, we decided Liam – and Finn and Rory – would be well-looked-after by our mothers while we were away, and on a rainy Friday evening, our friend Sarah drove us to the airport, and we were away. I, I’m not ashamed to tell you, was a basket case of joy from the moment I closed the car door.

And Paris? It changed my life.

Thing is, life-changing things aren’t always what you think they’re going to be: solutions to problems, or smooth, straight-forward transitions. They can be bumpy and painful and confusing. Don’t get me wrong – Paris was none of these. Paris was a dream, charmed and golden and rich beyond what I could ever have imagined, and that, my dear, is saying something if you know me at all.

But coming home was another story. What do you do with a window into another world, another way of being in the world, when you are so firmly rooted into a different one? See? Bumpy, painful and confusing.

I’ll tell you more, no question. I’ll probably even tell you more about my own Paris than you ever wanted to know, but I won’t hold it against you if you skip over those bits. But for now, baby steps have lengthened at least to include writing again, and that may be the biggest, wisest thing I’ve done in a long time.

Well, a year, to be precise.

Welcome back.

Writing at Cafe de la Paix

Writing, at Cafe de la Paix



For a while now I’ve been wanting to share a secret. Just wanted a few more ducks in a row, before I spilled the beans. And now, amazingly, there they are, all waddling beak-to-tail down to the river. So here goes:

We’re going to Paris.

Yes, really. And by “we”, I mean ROB AND ME, not anyone else, regardless of age, gender or biological relationship. We leave at the end of May, for 10, whole, beautiful days, and come back  first week of June. Plane tickets are bought, lovely little hotel booked, grandparents (I’ve started calling them Team Paris in my head) signed up to look after the boys, and yes, pretty-yet-comfy shoes purchased and ready.

All less than a month before my 40th birthday, which is, in my loveliest dreams, when I’d wanted to go.

And without putting too fine a point on it, this all is a remarkable, truly miraculous thing. We are the couple who went to Picton, Ontario for our honeymoon. 17 years ago. In the winter. Since the boys were born, Rob and I have been away longer than overnight exactly once, to the Dominican Republic when Liam and Finn were 19 months old. By the time we leave for France, they’ll be 12. So we’re, um, ready.

I dream about traveling all the time. It’s how I manage to survive not doing it: I just think about it a lot. I read the other day that if you just imagine eating the thing you’re craving, that satisfies the craving. For a long while, it was kinda working, but honestly, after a point, you pretty much realize that imagining hazelnut gelato sucks compared to eating it.

At the same time, we’ve done as much as we could do, and that just hasn’t allowed things like airplane travel and hotels. Tent trailers, yes. Cottage whoring, you bet. But going abroad? Even as I faithfully dropped my coins into my little Paris jar over the last year or so, I’ve known that it wouldn’t so much buy us passage as a couple of cafés and a croissant to share. But doing it got me through.

A month or two ago, Rob came home from work and sat down on the couch beside me. Out of nowhere, he started to speak, looking at the muted television, rather than at me.

“I don’t think we can go to Paris for your birthday this year.”

“I know.” And I did. As much as I joked over the last year about it, there was no question. It was absolutely impossible.

“I’m sorry,” he said, turning to look at me. “I tried – I looked into it… it’s just too much.”

“Oh Sweetie, I know,” I said. “It’s ok. We’ll get there someday. We’ll just stick to the grand boulevards ’cause we’ll be in wheelchairs.” I smiled.

And that, as they say, was that. It was ok, because it simply could be no other way.

And then, three days later, everything changed.

I was talking to a dear friend, who has been going through an excruciating time in the last few months, along with her partner. Just over a year ago, her partner’s estranged father had passed away, and quite shockingly, left a not-insignificant inheritance, albeit one bound up in a convoluted tangle of red tape.

These friends have been part of our lives for years and years, ours and our kids’. We’ve seen each other’s children arrive, grow, thrive, struggle, and we’ve shared the beautiful and the sometimes messy sides of our two families. No one is closer to really knowing our boys, and I think of their girls as at least nieces, if not more. And like us, they have always struggled with money: together we are a musician, a writer, a theatre director and a special effects designer. We used to joke that at least one of us should have been an investment banker, but c’est la vie. Our vie, anyway. Our households have been compatible on so many levels, and we’ve always understood each other’s situations empathetically.

Last year, they blew us away by announcing they’d like to take a trip once the inheritance was finalized, and they wanted to take us – all crazy 5 of us – along. Unfortunately, by the time the long and arduous process was finished, nearly a year had passed, and things for them were in a place they’d not imagined they’d be. The least of their concerns was a trip; we never gave it another thought.

Then, not long ago, I was making dinner when my friend called. I asked to call her back when things were quieter, maybe tomorrow.

“Sure, but hang on,” she said. “Let me leave you with one thing before you go; something to think about.”

” Ok,” I said.

“We were talking yesterday. About us, about you guys, about the boys, just stuff. And we completely agreed on something: Just because we can’t go away right now, doesn’t mean you shouldn’t. We’d like to help you do that. You can use the money for wherever you like, but we’d love you to use it for travel. To get away.”

It is the most generous, touching, poignant gift anyone’s ever given us. Naturally, I objected profusely at first. But after a few days of talking – to them, to Rob, to the voice inside my head – I relented, and gratefully accepted. And within two weeks, we realized that with a little of our own money, we could make Paris work.

Everything fell into place in a way we’re just not used to. For a family that can hardly find time to return a pair of pants to the Gap, things just lined themselves up like… well, like ducklings.

It’s unreasonable how much I’m looking forward to it. Quite possibly unhealthy. On the last day of March, we were in the kitchen, and I yelped that I was SO HAPPY TOMORROW WAS APRIL! Rob frowned at me. “You know why, right?” I said grinning. “Mmhmm.” Still frowning. “‘Cause tomorrow I can say WE’RE GOING NEXT MONTH!!”

I told Rob I hoped he didn’t mind but it was a little like having a lover on the side… I daydream about how the streets will feel under my feet, how the markets will smell. What the frites will taste like; how much wine I’ll drink! I pass shop windows and I’ll catch sight of a scarf and think, “Ooooh… I could need that in Paris…” It’s delicious and enchanting already.

If it never happened, if tomorrow something happened that made it fall through, the last 6 weeks would have been worth it. They haven’t been the easiest weeks around here; actually, the opposite in some ways. But what’s different from other weeks is that I’ve had an escape, one I’ve used freely and with so much joy.

Months ago, our friend Matthew asked me if, having dreamed of Paris for so many years, I was afraid it might not live up to my expectations. I laughed. “Sweetie, it couldn’t help but live up to them. I don’t have any. I just want it to be what it is, whatever it is. I just want to discover it for myself.”

Besides, it’s Paris. How could it not?



On Valentine’s Day, no less. Ok, it was a while ago, but this is still eminently caps worthy, in my world. And it was lovely and all that, getting fancy and trying out my new $12 necklace, and generally feeling like a grown-up. I’m not going to mention about being home by 10:30 from a 9:00 reservation. Nope.

I met Rob and the restaurant, as he was coming from a gig. Rob’s mom arrived at our house as I was putting dinner on the table, and sat down to eat with the boys, while I hung out for a while before getting dressed.

Now, dinner times in our house have a two patterns. One is slightly less common than the other, and involves a lot of yelling and sending-upstairs, but is fortunately not the path followed that night. Instead, it quickly went the über-nerd route, which generally involves covering at least three of Star Wars, Lord of the Rings, Runescape and Dungeons and Dragons, often simultaneously. Then two-thirds of the way through the meal (if we’re lucky – there are nights we don’t make it to “pass the salt” without Rob and I being hopelessly lost) everything degenerates to a point at which Rob and I can’t understand a bloody thing.

The guys were naturally excited to see their Nan, and Finn immediately dives into D and D talk. That Finn and Liam are avid D and D players should come as no surprise, thought I honestly still have no idea what D and D actually is. Or how it goes. Or what they do. Or how they can go all those places but still be sitting in our friends’ living room. But whatever. I am awesome at being supportive, and nearly as good at faking comprehension.

(They started playing with their grown-up friend Drew, who lives across the street from us. Drew and Rob and I actually went to high school together, and then he and his wife Sandy moved in a few years ago, and now we can’t live without them so they can’t ever leave. They are the cool couple, especially to the boys: they have a beautiful house, which also happens to be dotted with Muppet paraphernalia, Wii games and swords, Sandy has the worlds’ biggest Pez collection, and they have ALL the Rock Band games. So basically my kids think they’re super-stars. And marvelously, brilliantly, they seem to dig my boys right back.)

For months, Liam and Finn’s weekends were tailored to when Drew and Sandy could rock out in the basement, but then about six months ago, Drew brought out his D and D stuff, and their enthusiasm for it makes me think maybe crack is involved.

Sandy and I go for coffee or ice cream while they play. Because we understand ice cream.

The crew has expanded to include Half-Elf Emma, our friends’ Nancy and Dave’s 10 year-old; Dave himself (a veteran D and D player), whose character Grepthor is a dwarf; Liam as Barourn the dwarf (impossibly hairy and with a two-foot spike directly on the top of his helmet, all the better for ramming); and Finn as Aodhan Blackling, for whom he’s written an entire life history and character profile. Dungeon Master Drew hosts and provides root beer and chips. Dave wears a helmet I can’t even lift, Liam and Finn wear the Jedi cloaks I made them in the summer, Emma wears a black velvet dress, and Drew wears this, which he made to fit to his exact head:

Helmet of Mighty Dungeon Master Drew

They all take it very, VERY seriously. They play for hours on Sunday afternoons, and then they come home, and Liam and Finn proceed to tell us every. Single. Little. Thing.

ANYHOO. There we are, sitting around the dining room table, the boys, Rob’s mom, and I, and the boys are nattering on at their grandmother about how many daggers Finn has and how many GPs Liam needs for his whatever-thingy, and on and on. I know I have to go get dressed, but Rob’s mom has developed this glazed, deer-in-the-headlights look, and I know she’s got NO IDEA what they’re talking about. In fact, I’m pretty sure she doesn’t even know what D and D is, let alone why their using the word ‘campaign’ so often. But she’s too nice to say anything, so she just keeps eating her chicken and her eyebrows just get higher and higher. She’s just at the point of running out of different ways to say “Ah-ha?” so I jump in.

“Ok, guys, I think that’s enough D and D talk, yes? Let’s talk about something else.”

“Ok,” says Finn, “But I just want to tell her about the dagger I bought today! One last thing…”

“And I just need to tell her about my jewels!” says Liam.

Sigh. “Fine. Ok – one thing each, then give Nan a break.”

I get up, collect some dishes and head into the kitchen to tidy up. I still have to get dressed, but upstairs is just so…far. And her eyebrows are just so… high.

So Finn goes on about his forty-three daggers and Liam tells her all about how THRILLED he is with the jewels he spent all his money on.

“They’re for my beard!”

Um, what? (Dish cloth suspended in midair for a few seconds.)


“Yeah! They’re so cool and I used them to decorate my beard! I’m a dwarf. I have an AWESOME beard.”

I’m pretty sure Rob’s mom is on that cliff where confusion tips over into serious concern.

“That’s…. so….. fun!” she says. The word “fun” comes out sounding like she might have choked a little. I hope she’s ok.

And then the next part just happens so fast. There I am in the kitchen, up to my elbows in dishwater, and from the dining room, I hear my lovely 11-year-old son say to his conservative, gently puritanical Dutch grandmother:

“Yeah. They look so great. And next session, it’s going to be epic, because I’m going to ask Grepthor to marry me. That’s Dave’s character. He’s a dwarf too. And he’s a guy, and I’m a guy, but I just wanted to spice things up in the game, you know?”

I can hear Liam beaming from all the way in the kitchen, and I’m thinking, “No, sugar, I’m going to go out on a limb and say I’m pretty sure Nan doesn’t know, but I do know she adores you, and your Nan is a gracious woman.”  So while I stood there, ten or twelve long, long steps from the dining room, my eyes as wide as dinner plates and my mouth both grinning and agape at the same time, I hear Rob’s mom put her fork down, and say, in a very high, only slightly wobbly voice,

“Ah-ha? Well. That sounds like fun. Who wants cookies?”

Family is an awesome thing.


Well it’s been a week, almost to the hour. A week since Rob and I and Rory drove to the wilderness of the west end of Toronto, met a doctor for the first time, and spent two and a half hours with her while she assessed Rory for autism. There is a long version, of course, but the short one is that yes, no question in fact, Rory is autistic; specifically, he has Asperger’s, like his brother Finn.

(Finn is not amused.)

The longer story is both simple and odd: simple, because really, it went so properly, so correctly, we couldn’t have hoped for a more thorough, more competent and comprehensive assessment. Odd, though, because as is so often the case with big life things, some things about the whole experience surprised me in ways I hadn’t been prepared for at all.

We liked the doctor; a well-respected developmental pediatrician with lots of experience and obviously a hefty balance of good judgment to boot. She knew what she was doing from the moment she stuck her head in the exam room to introduce herself, and not a word was wasted in the whole time. Rob had initially not been sure if he could make it – in the end, it was so good he did. For if either of us had had any reservations, either that Rory merited the designation, or that one assessment on one afternoon might not reflect it, we were forced to abandon those notions almost from the word ‘go’.

The first thing we had to do was fill out some questionnaires. I know questionnaires – I am Developmental-Questionnaire-Girl. I have completed HOURS of assessment questionnaires for each of my kids, and am pretty quick to identify what each one is probing for: sometimes they’re for several things at once, such as ADHD, anxiety, depression, and Tourette’s, or whatever. Occasionally, they’re more focused, testing for one particular tendency.

So while waiting for the doctor, we sat in this little room, and I started on the sheaf of papers. You know the kind: “Rate your child’s frequency or severity from 0 to 6” etc. And our of the first, like 20 questions, 18 are sixes, one is a 5, and one is a 1, which in that particular case, indicated that he “NEVER” engaged in make-believe play.

Rob and I looked at each other, our eyes wide. OH… It’s like that, then. So, all that concern about maybe not testing well, maybe not qualifying, was more or less out the window, considering he’s apparently the poster boy for this. Ah-ha. With that sudden realization, the assessment proceeded.

I won’t go over everything; in fact, I won’t go over much at all. It was long – an hour longer than the 90 minutes it was supposed to be – and it was, for Rory especially, grueling.Rory has a painfully hard time discussing anything hugely emotional, and he cannot bear to be evaluated, even by his parents. That afternoon, every aspect of his behaviour, his aptitudes, his challenges, his personality, his shortcomings, his deficiencies were examined in minute detail. He was dissected, and his only escape was in the form of several trips to the washroom, and putting his head in my lap.

The final insult came when the final component of the assessment was a physical exam, which none of us were prepared for. Rory has a hard time with anyone touching him at the best of times, let alone when the person in question is a confrontational relative stranger. The doctor was kind, and firm, and told him she needed to listen to his heart, his back, and needed to see his arms and legs. It was nothing short of torture for him, and though she was right to insist – it was a crucial part of the process, I know – it was so unfortunate that it came when he was already feeling so overwhelmed, so fragile and small. It made my heart hurt.

The surreal thing about the whole experience for me, and for Rob, I think, too, was that right from the start, from those questionnaires, every line of examination she took confirmed the diagnosis. In ways we were expecting, like his complete avoidance of imaginative play or roll-playing, or his great difficulty with peers, to a few we were surprised by, at least a little, like the issue of eye contact. He met each criteria well and truly.

I know – you’re thinking, “But you knew this. That’s what you’ve been thinking for months and months. Right?”

Right, I guess. No, right. Totally. But I’m not sure I knew how unequivocally he would be identified, how plain and clear it would appear not just to the expert, but to me, as well, when I was looking at him through the right frame. He is not on the fence, he’s not borderline, he’s unquestionable autistic.

About that: autism vs Asperger’s. Near the end of the assessment, the doctor asked me if I knew the difference between the two. I answered that as far as I understood it, Asperger’s was synonymous with high-functioning autism. She clarified: In fact, they can be indistinguishable: while it’s true, most individuals with Asperger’s syndrome are of normal to high intelligence, it does not mean they don’t struggle with the same challenges in many aspects of their life as do people with classic autism. The clinical difference is actually the onset of speech: if speech develops early or normally, then a diagnosis of Asperger’s is made. If speech is delayed, it is autism. That’s it. So Rory and Finn, who both (along with Liam) spoke at around 9 months, have Asperger’s.

After the wretched physical exam, and a few more forms, and a letter from the receptionist alerting Rory’s school to his new diagnosis, we headed home. Rob had to rush off to a gig that night, so I made dinner, and fed the boys, and read How to Train Your Dragon to Rory, and finally kissed everyone goodnight. When Rob came home a few hours later, I was curled up on the couch, wine nearby, couple of Kleenex discarded on my fuzzy pink blanket. I don’t even remember what was on TV, only that I was staring at it.

He got a drink and came to sit near my feet. “So,” he said, “How do you feel? We liked her, and it went well, and it’s done, and it’s what we thought… Do you feel good now?”

And I just kind of crumpled a little. No, I didn’t feel good. I know it was really good, and really true, and none of it was wrong, but I didn’t feel good, I felt… sad.

I meant all week last week to post, to write, to tell you all about what happened, to process it the way I process things. But the biggest surprise of all was my own reaction to the whole thing. I was winded – almost literally –  and it was all I could do to just keep one foot in the present. About Thursday, it hit me: the hardest thing about all of it wasn’t the diagnosis, really. It was the experience of seeing my son through someone else’s eyes, even for one afternoon; someone who was only looking for his deficiencies, only seeing his shortcomings. All I wanted to do was hold him and listen to his funny magnificent ideas and feel his small hands on my cheek and feel his forehead under my lips. I wanted to immerse myself in the whole beautifulness that is him. That is also him.

Because that’s it, isn’t it. He’s not the boy the doctor assessed last week; at least, not exclusively. He’s so much more, and extraordinarily so. But it is all there, and now I guess, we go forward to try to get as much help and support for Rory as we can. I really meant to start that process last Tuesday… It seems I needed some time. Funny – we’re never quite ready for what’s around the corner, are we. And sometimes hibernating and reading too late on your six-year-old’s bed while eating apple slices is as good a way as any to regroup.

Now, onward.


I’m sitting here at my keyboard deeply grateful for Spell-check this morning. Actually, I’m always grateful for Spell-check, because as a graduate of our country’s finest bilingual education system, I am proudly incapable of spelling in either official language.

But today I’m spelling like a monkey with its eyes closed because my hands seem to be shaking rather a lot.

See, Rory’s developmental assessment is this afternoon.

And I’m finding myself in the very strange position of more or less hoping the result confirms what we’re thinking, which is that he fits the profile for an autism spectrum disorder. Which is a very weird thing to find oneself hoping.

The thing is, if he doesn’t, I don’t know where that leaves us.

So I’m about to go collect Himself, pack a peanut butter bagel, pick up Rob from the studio, and drive to the no-man’s-land that is the west end of Toronto, and meet the woman who holds so much of our son’s future in her hands. Or perhaps more accurately, in her observation, in her wisdom, I hope, in her experience.

I’m not really sure what the process will be, but I’ll let you know, I promise. And meanwhile, keep your fingers crossed for us, will you?


Last October I attended the largest symposium on Autism in the English-speaking world, sponsored by Toronto’s Geneva Centre for Autism. 6 hours a day for two days of solid seminars, so packed with expert and first person information it truly blew my mind. I was there as a parent of a child on the spectrum: Finn, who has Asperger’s syndrome. And to be sure there were moments when I thought very much of him: how a certain thing would help, how a speaker with autism sounded so like him. But what stunned me was that at the end of the two days, the person I’d thought of most, the son who continually came to mind as I was listening to the challenges faced by people with autism, the characteristics of children on the spectrum, was not Finn; it was Rory.

That wasn’t really a huge newsflash – the idea of Rory possibly being on the spectrum had been playing around in my mind since we had his Tourette’s diagnosis last June. In short, yep, he definitely has TS, but that hardly begins to explain the vast majority of Rory’s obvious challenges with getting through an average day. By the way, Tourette’s and autism are frequent bedfellows. No to mention that children who have even one sibling with autism have a significantly higher risk of having autism themselves.

What I started to realize was that the five or six people who interact with Rory the most, and most successfully, had been successful by approaching him as if he were autistic. It is a spectrum, remember; and each and every child with autism has it differently, and will present with sometimes vastly different (even contradictory) strengths and challenges. With Rory, all the people close to him already understood something about how to relate to a child on the spectrum, and more or less without consciously deciding to, began a long while ago to relate to Rory that way.

It’s as if we began “intervention” before diagnosis.

We did so, I think, because we could. We knew something about how to – Rob and I have had to learn an awful lot about autism and all that goes with it, through Finn as well as in our efforts to learn all we can to help Liam and Rory too. All parents of kids with neuro-developmental disorders do; it’s like a crash PhD course for all the marks in the world. And Rory is our third interesting kid. I think when we saw his particular developmental sensitivities, challenges and struggles, we just immediately started applying all the understanding and coping techniques we knew. Rob, me, my mother, Rory’s two special needs assistants at school (who both have extensive experience dealing with children with autism), his teacher for the last two years, his occupational therapist (at a clinic largely for children on the spectrum) – we all had some insight, we’d seen some of this before, and we just used what we knew. Managing Rory as if he had an autism diagnosis became more or less automatic.

But I don’t know that we ever really thought about an actual diagnosis. I guess it was a process, like it was with the other two boys. Understanding comes both in smooth, gradual waves, and in flash floods; there are times when something slowly dawns on you, and times when you seem to be smacked upside the head with a sudden clarity of understanding.

The autism conference was a bit of a smack. I realized that even I had been carrying around a fairly narrow definition of what it meant to be autistic, and that because Rory didn’t look exactly like Finn, or like one of the other children I’ve known with the disorder, my mind didn’t jump to that word as a label. The funny thing was that for months before that, I had had dozens of conversations, with myself as well as with other people in Rory’s life, about how he presented so much like someone on the spectrum. He functioned so often like a child with autism. So many of the same practices and interventions seemed to help him in the same way they helped kids on the spectrum. I was basically saying, Look. Think of it like he’s autistic, and things make a whole lot more sense.

Um….If it walks like a duck, and quacks like a duck…


Meanwhile, even with this circle of educated and able people around him, Rory has continued to struggle. School can sometimes be just tolerable, and other times downright traumatic. Clothing, transitions, outings, social events, even playtime at school can be overwhelming and profoundly distressing. The list of difficulties goes on, and in spite of all of our best efforts, we reached a point when we realized that we just didn’t know enough, and couldn’t help Rory on our own. It’s funny; by the time parents reach this realization, I think, it always feels desperate. Finding someone who can look at your suffering child as say, “Yes, I get it, I’ve seen this before and I can help” feels so urgent it’s almost all-consuming. It’s as if you can’t go one more day watching your child struggle so fiercely.

But before help, we needed an actual diagnosis; of autism, or something else.

So early in November, I started the phone calls. I started at my GP, and asked for a referral to anyone and anywhere that did developmental assessments on children with an eye to autism spectrum disorders. I provided the names of all the organizations we’ve been associated with for the boys over the years, and was open to any additional names my doctor could come up with. I spoke to the school psychologist, our TS doctor, a psychologist friend; asking for any and all leads. I called every clinic, children’s facility, autism association, treatment centre and clinician I could track down, asking for an assessment as soon as possible.

Two weeks later, I had a phone call from the office of a developmental pediatrician, recommended by my GP. He would accept the referral, and we could have an appointment in April. This was November, remember. April, I thought, well, if that’s as soon as we can get it, ok. Oh – said the receptionist, that date is for a consultation only. If the doctor agrees that an assessment is warranted, an appointment will be made for April 2012. When my kid would have had to struggle through TWO MORE GRADES. It’s a quarter of his life from now.

No. Bloody. Way.

Of course, if we had $3000 to spend, we could get an assessment next week.

Back to the drawing board. The next week, three new leads, all at hospitals, including the foremost pediatric special needs centre in the province. And within three days, all came back rejecting our referral. “Rejected?” I asked the secretary at my GP’s office? “I can’t believe I’m saying this to you,” she said, “But all three only do assessments on children up to age 6, and since by the time they could get him in Rory will be 7, they won’t take him.” She sounded as stunned as I was.

So basically, he’s TOO OLD TO BE DIAGNOSED? What?

Right now, there are more people with autism than those with cancer, AIDS and diabetes combined. I more or less work full time advocating for my boys, all of whom have at least one diagnosed neuro-developmental issue. I live in the biggest city in a highly developed country, I speak English, I am not stupid, and I am shameless and pretty vocal when it comes to reaching out for help for my kids. And this is not the first time I’ve been down this road, so you would think that it might be a little smoother by now, wouldn’t you? But it took about 50 phone calls, to every agency in the city, to every developmental pediatrician, to three medical clinics at which we are already patients, to our school psychologist and to every friend in the business I’ve got.

Finally, and yes, much earlier than I’d expected, we got an appointment for an assessment. It’s with a pediatrician we know nothing about, but she does developmental assessments, and we’re taking it. And it’s two weeks from now, which is so unheard of I actually had to call back and confirm it was for real. We were lucky. We did get responses from a couple of other doctors and agencies, but all had waiting lists of on average 6 months. And 6 months, for any child, let alone one in often profound distress, is far too long. The assessment takes about 90 minutes, and uses no specialized expensive equipment: no MRI, no CT scanner. Just a knowledgeable person talking to us and our child.

And as grateful as I am for this ridiculously swift response from this doctor, I know it’s a fluke. So what in God’s name do parents who aren’t us do? And how can we as a society be ok with this? If Rory had a cough, or a broken arm, or say had gained or lost an abnormal amount of weight in a short time, he’d be fast-tracked through to see someone who could help. Why are we leaving so many children, and so very many families out in the cold? The best minds in the community estimate that one in 110 children has a form of autism; one in 90 boys. And we know empirically that early identification and intervention can make a world of difference to the quality of life of these people as children, and into adulthood. But as far as our medical community is concerned, they’re on their own.

Plus ça change…

Oh well hello, 2011. What? I’m two-and-a-half-weeks late, you say? (I know, you’re saying it gently, but I can hear you). Yeahhhh. The crazy thing is, I’ve been trying to stick my fingers to this keyboard for, um, about a month now, and it’s ONLY JUST HAPPENED. Seriously: they brushed up against it once in late December, but it was fleeting.

The holidays are nuts, to be sure, but on our end they’re slightly madder than most: we have three Christmas’, and seven – 7 – immediate family birthdays between December 10th and the 21st. And they’re not, like, second cousin Maude’s either: this year it was my father’s 70th, and Rob’s mom’s 65th. So a bit of a ‘do for each.

And then there’s the baking, and the wrapping and the sewing and the baking and the cleaning and the sewing and did I mention the baking? It’s like Little House on the Prairie on crack. Lots and lots of crack.

There is also some drinking. Just sayin’.

And in the midst of it, really, I’m usually exhausted, stressed, and happy in equal measures, which is often more than I can say for the rest of the year. I honestly love the holidays, I love my sparkly tree, I love having people in my house, cooking for them, topping up their drinks, watching the kids LOVE their presents. And I hate January.

September is hard, no question. The reentry into the whole school thing, and alarm clocks and making lunches… But mostly, it’s the fact of having to face going back out into reality with my boys, and picking up the mantle again of trying to help them negotiate the world. It’s the bulk of my life, it seems, and that’s just as it should be right now; I’m really ok with that. But getting back into it twice a year, September and January, feels like being forced to hop a careening box car that I don’t want to be on in the first place.

It’s made even less smooth, of course, because the boys don’t find it easy either. So the first few weeks or a month back at it are always, always, bumpy. Calls to and from teachers, renegotiating attitudes to school, homework, social stuff… it’s all weighty, and comes with lots of equally weighty fall-out from the boys themselves. Change is, well, crappy. Transitions are brutal, and that’s pretty much par for the course with any kid with a neuro-developmental issue, not to mention a whole bunch who are perfectly normal. So the tantrums are worse, the stone-walling about homework and computer time and going out are worse, and everyone’s irritable. Thank God for Bejeweled on my iPhone. Wait – was that out loud?

And then there’s the periscope. Not a real one, of course (Rory hasn’t built one. Yet). But a few times a year, and it always seems to happen at the same times – January and August – it’s like we look up for the first time in months, take stock, and realize, with what feels like crushing desperation, we’re in the same place.

It’s like we’ve been driving the submarine around for 6 months, checking the coordinates, taking all the best precautions, heeding expert advice, and using the most sophisticated navigational equipment at our disposal. And after all that, we surface to find we’re staring at the same bloody seagull on the same bloody rock. Only now six more months have gone by, and we’ve got to find more equipment, more advice, more expertise, and try to change course again.

Sometimes it’s medication: we spent several years trying different things with Liam before finally coming to the conclusion that “eh” is about as affirmative a pronouncement on whether it’s working or not as we’re going to get. Meanwhile, all the stock we put in a pharmacological solution, we then had to refocus on another sort.

Last year at this time, I tried taking Liam to the wonderful psychologist at the TS clinic, hoping she could help him find some strength, some coping skills to manage his terrible anxiety and rage. After six months, all three of us realized it wasn’t the right match, hers weren’t the right methods for him. So began again the phone calls, the inquiries, the putting out of feelers to every single person and organization we’ve ever had contact with to see if anyone could help us find help for Liam.

After a few months, we got lucky: a children’s health facility met with us, and after learning of the extent of our kids’ challenges, proposed family meetings twice a month. Again I felt that rush of optimism, of hope: here, finally, were people who were paying attention, who had Knowledge, and Expertise, and could Help us. Maybe we’d look back and see this as a turning point….

That was 5 months ago, and last week, Rob and I arranged for our last meeting with them. We went, diligently, all 5 of us, every two weeks. But here we are, and Rory and Liam are struggling at least as much as they were in the summer, actually more. Family therapy is great, but it’s a bit of cart-before-the-horse when at least two-fifths of you are so not-ok they can’t make any use of it.

So we’re on our own, and at the drawing board again. (Rory is his own story, and I’ll get to that soon.) For now, I’m going to finish my coffee, try to find my favourite pen, and start the phone calls. And between you and me, there may be some Bejeweled.

Mea Culpa

Dear Future Daughters-in-law,

(Unless one or two of you are men, which would be fine too.)

I am sorry. I feel I should apologize now, while it’s all fresh in my mind, because who knows, when you’ve got them, I might be in a sanatorium and mostly non-verbal. By them, of course, I mean my sons, fine young men that they are.

And fine they are, as obviously you know, unless you’ve only married them because they’ve become fabulously wealthy, in which case, you don’t get my sympathy.

If, though, as I suspect, you three have fallen madly for my sons’ considerable charms, and find yourselves hopelessly bound, you ought to know how sorry I am and how hard I tried.

For years I’ve toiled, unrelenting and with all the enthusiasm of a true believer. “They are smart boys,” I’ve told myself. “It is a small house, not so hard to keep; of course they can learn to put things away, and to find them.”

I am here to tell you, defeated: I was wrong.

There is no hope.

One of Them: MAMA!

Me: Yes?


Me: I doubt that.


Me: Look down.

O.o.T.: Oh.



Me: Lost? Like, forever?

O.o.T.: YES! AAARGHH! (Tears, garment-rending, much gnashing of teeth)

Me: Where did you drop it? (Outside? At school?)


Me: (no words)


O.o.T.: I’LL NEVER FIND IT IT’S JUST GONE oh here it is.

Me, leaving: Where did I put that Bourbon?

I really have tried: I’ve used rewards and incentives and even pure common sense, and it never got any better. Liam’s actually proud of his designation of “Worst Finder Ever” and in and in a house of four men, that’s a pretty dubious distinction. Rory once said: Daddy fixes things, Mama finds things.

I had no idea that finding things was a skill. And when I discovered that it must be because I had it and no one else I live with did, I thought: it must be something I can teach them. I have actually spoken the words: “You have to actually MOVE things to find something.” It was a shock to them that the thing they’re looking for could be there even if it’s not SITTING RIGHT ON TOP OF EVERYTHING ELSE. “Pick stuff up! Move stuff around!” All a huge mystery, every single time.

It’s crazy how much of my time is spent moving things around. Seriously – I pick things up, and move them somewhere else, mostly where they’re supposed to be in the first place. I move Liam’s clothes from all over the living room, Rory’s art stuff from all over the house, and Finn’s books and paper from wherever he was when he suddenly finished using them.

And it used to drive me up the wall – “WHY ARE YOU PEOPLE SO DENSE? JUST PUT THINGS WHERE THEY BELONG, AND THEY’LL BE THERE WHEN YOU WANT THEM!” But I’ve come to the conclusion that it just might be a hopeless thing, a lost cause. Evidently, like generations of mothers before me, I am raising three men who will leave their socks in the middle of the floor, eleven inches from the hamper; who will ask where the scissors are every, single time they need them; and who will, instead of putting special things directly into special places, put them in an “on-the-way” place, like on a ledge, and then freak out when they can’t find them.

They really are fine young men. Wonderful, in fact. And fortunately, they’re very generous with compliments, which makes all the putting away and finding somewhat more rewarding. But there will be times, I’m sure, when in addition to cursing them under your breath, you’ll probably want to curse me. “Didn’t your mother ever teach you any of this??”

Tell you what. Save your breath, leave the spatula maddeningly “hidden” in it’s usual place beside the stove, and come on over to my place for a drink. I know just where the Bourbon is.

Beware of Mama

You know those days, those days when you’re pretty sure you’re not going to make it to tomorrow? Let me rephrase: You know those days when you’re pretty sure your children aren’t going to make it to tomorrow? Yeah. Fortunately, they rarely occur sequentially, but they’re never convenient. And I’m always kind of surprised by them: like, it never occurred to me that morning that seven hours later my children and I might – just possibly – NOT be sitting around singing Kumbaya in rounds. I know, right? Crazy.

Rob thinks I’m a pathological optimist with a really short memory.

He’s probably right, but I’m going to choose to look at it as a pretty good coping strategy.

The other day, we all had an early evening meeting with a family therapist and her associates, who are working with us to manage the many, many challenges we seem to come up against in our life as a family. I like them, Rob likes them, even the boys, I think, like them as people, and don’t even mind the being there part. It is, after all, only one hour every two weeks.

But my kids don’t actually like going anywhere. They like BEING places, sure. But the actual leaving-of-the-house, the conceiving-of-the-outing-and-its-duration-and-its-degree-of-time-wastingness, THAT part sucks massively. I would not hesitate to use the word Heinous, even.

And yet, go places we do. I should clarify, at this point: for the older two, “wasting time” consists of anything that is not related to a computer. Rory’s a little less defined in his objections, but just doesn’t do well with all the minutia of the act of leaving itself: the putting on of shoes, the going to of bathroom, the deciding what to take, the sudden and overwhelming irritation of pants’ waistbands or shirts’ collars. All this comes up in the half-hour (ok, really, the ten minutes) leading up to leaving the house, regardless of whether we’re going to the dentist or a movie.

So the other day, me and my short happy memory cheerfully agreed to pick Rob up at the studio on the way to the appointment, rather than have him come home. And help. With the crazy. But whatever, I thought, it’s no big deal, it will be fine. We have more than half-an-hour from when the big boys get home and when we have to leave – lots of time to get organized.


It went something like this: Rory’s recently become addicted to the computer, and uses my laptop upstairs. So he comes home from school and immediately a) BLOWS UP because he HAD NO IDEA we were going anywhere, and he really wants to play on the computer till tomorrow. As I am trying to patiently and with much calmness remind him that he’s been told four times – TODAY – that we had an appointment, but maybe there are 10 minutes free, if he’s all otherwise ready…. Liam and Finn burst in the door.

There’s really no other way to describe it – no “Hi, Mama! How was your day?” No “Do we have time for a snack before we go?” No-no. It’s all “I CAN’T BELIEVE WE HAVE TO GO! LIKE, IN ONE MINUTE!”

Me: Actually, in about 35 minutes.


Me: Um…. not real-…


And then follows the whole, “Why do we have to go to that stupid place it’s not even helping!” thing, to which I respond that it’s only been three meetings and anyway we’re still going.

Me: So put your backpacks away, go pee, wash your hands, and we’ll find a snack.

I turn around to deal with Rory, who’s just discovered that his recent cold has bestowed upon him the most grating, screeching whine ever heard by man or beast, and is now making long, drawn out cackly moans with the words “Iiiiiiii waaaaant to uuuuuuse the cooooompuuuuuter!”

By the time I turn back to Liam and Finn, they’ve disappeared, and I hear them yelling at each other downstairs, in the office. Wherein lives the computer.

I thump my way down, and Finn’s sitting there in front of their computer, coat still on, backpack still on, obviously not having visited the washroom, and Liam’s hollering at him that HE gets to go on first.

“ENOUGH!” I shout. “YOU: get upstairs, take off your stuff, go to the bathroom, and then we’ll talk! YOU: stop shouting!” (The irony did not escape me, but sometimes there’s nothing for it.)

My shoulders are now halfway to my temples, and I can hear Rory creaking on about things from the living room. I’m just about to give Liam the “If I have to mediate the dealings with this computer no one will get to use it” speech, when he jumps in and starts growling about having NO TIME TO DO ANYTHING tonight. My teeth are starting to hurt. “Why,” I am thinking, “Why are you people such pains in my bum sometimes?”

And all of a sudden, through the open door from the office to the laundry room, BUCKETS of water start pouring out of the ceiling. Big, wet, splashy buckets. A deluge, even. And because this has happened before, I know exactly what has happened, which is that Finn has overlooked the fact that the main floor toilet is packed full of paper, but a curious lack of water, and oh yeah, had been plugged for two days. And he flushed.

I could write all the many words that came out of my mouth at that point, but my mom reads this blog. Suffice it to say that my children were appropriately shocked and awed, and I more or less didn’t care. At least for the first five minutes. I think maybe it’s impossible to simultaneously be mopping up PEE WATER from your main floor hallway before it reaches the pile of FRESHLY LAUNDERED BABY CLOTHES (and bedding, and gear) for your sister’s new baby, AND care that your kids heard you say the word f***. Really.

So I’m shouting and carrying on, and mopping, and throwing sodden towels in a heap and thinking – well, a lot of things, actually: One, that this WOULD happen to me, now, because that’s just the kind of day it is; Two, that I’m really ticked off that the stupid toilet hadn’t been unplugged; Three, that I probably should apologize for the utter fury and foul language my kids just witnessed; and Four, I am really, REALLY not sorry yet.  Also, that I profoundly regret telling Rob he could stay at work, because somehow I’d like to be able to rant at another grownup right about now. And Rory’s voice is now so high and loud it’s almost inaudible, because how he’s not only miffed about going out, and the computer, but he’s upset cause I’m upset, and his voice can’t express all that in normal decibel ranges. And Liam’s crying, and Finn’s really sorry, and I’m still MOPPING and thinking how bloody much water there is and I haven’t even LOOKED in the powder room yet, and then there’s a knock on the door.


You have got to be kidding me.

My head snaps up, and I glare through the glass door, half-crouched over, arms full of pee towels, and there’s this GUY standing there. He’s young-ish and well-dressed but with a square hair-cut, and I think instantly that he’s probably selling something and I hate him a little bit. Somehow, this is his fault too….. But he’s right there, and he can plainly see I’m home, and he’s got that simpy “Hi There” face, and a voice very far away in my well-brought-up head says, “What if it’s important?”. So slowly, still clutching my towel, still bent over, still scowling like a complete hag, and with what must have been LASER BEAMS coming out of my eyes, I move towards the door, and he starts BACKING UP.

Really. I made the poor man recoil in horror.

He hadn’t quite fallen off the porch when I got to the door (it’s a very small house), and I held the dog back and opened it a crack.

“YES?” I barked, rather louder than I’d intended.


“Ya think??”

“Sorrytobotheryou, pleasetakethisenvelopeThankyouverymuchHaveaniceevening.”



Oh bollocks. I just scared a guy. Well, some days are just like that.

Paying our Respects

You only get the one life.

I say that a lot, sometimes to justify impulsive and possibly ill-advised actions, like going up the street to our friends’ place for a drink or two at midnight when I’m already exhausted and really REALLY should go to bed. But I mean it, and I’ll keep saying it. One life, one go-round. And while I believe fiercely in making the most of it, I can’t help admitting that having two or three would rock. You could do SO MUCH STUFF. I would definitely spend one of them traveling more, maybe constantly. In one I’d learn to speak at least six languages. I used to think I’d love to spend one of them running a beautiful little bakery in France, but I’m over that.

No question though, if I only got one more, I’d spend it working with great apes.

Caught you off guard, didn’t I? Maybe a bit. But weirdly, it’s completely true, and has been since I was about 9. One evening I watched a documentary on PBS about Koko, the lowland gorilla who speaks American Sign Language. I was transfixed, and wanted to know everything about her. I even went so far as to learn a little ASL (all the better to communicate with Koko should the occasion arise). When I was about 15, I read Dian Fossey’s Gorillas in the Mist, and at 17 saw Sigourney Weaver in Micheal Apted’s stunning film. I wanted to travel to Rwanda, wanted to make my life studying gorillas, or orangutans, or chimpanzees, like Jane Goodall. But in spite of the genuineness of my passion, I already had a life. I was deeply ensconced in theatre in high school and then university, and to be honest, my science marks left a little something to be desired. I wanted to be an actor, a writer; I hadn’t planned on falling in love with a whole other world.

And so it remained merely a fascination, an interest, and eventually, something I only half-advertently passed down to my kids.

We’ve been members at the Toronto Zoo since the boys were tiny, and we more than get our money’s worth. We go about 7 or 8 times a year, which kicks both the Science Centre and Museum in their proverbial arses. When the boys were little, I thought it was because the zoo gave them the chance to run around, be outside; I’m sure that was a big part of it. But honestly, they really loved the animals. And mostly, we love the apes.

In fact, we’ve been known to drive all the way out to the zoo, check in with the orangutans and gorillas, maybe say hi to the meerkats and head home. It got to the point where we realized we were resenting having to see other animals, so one day we brought lunch, some notebooks and drawing stuff, and plunked down for an hour or so with each family. Rory drew, Liam and Finn made little notes, and we just watched. Each time we go, we spend longer at the orangutans and gorillas than anywhere else. We’ve gotten to know the individuals, the families, the new babies and the rivalries.

This past year, both families have suffered losses: Molek, the massive, Chewbacca-like senior male orang passed away in June of this year due to kidney failure, and Samantha, the zoo’s second oldest Western Lowland Gorilla, died at the age of 37 from a stroke.

We’ve watched these animals, these great intelligent sentient creatures, for years. And we wept for them when we heard the news each time.

A few weeks ago the boys and I again made the trek out to the zoo, and without even really meaning to, went straight to the orangutan exhibit. As we watched the two females on display that day, Ramai and Sekali, and their babies, Kembali and Jingga, I noticed a volunteer across the exhibit, and we eventually made our way over there to talk with her. Partway through the conversation, she said she hadn’t seen us in a while (I told you we went a lot…) and asked if we’d been over to see the gorillas since Samantha’s death a couple of months earlier. I told her we were on our way there, and that we’d been so sorry to hear.

“It’s been so hard,” she said. “especially to hear Charles crying.”

Charles is the gigantic silverback. He was Samantha’s longtime companion, and in spite of his small harem of females, she remained his favourite.

“He still cries almost everyday. It’s the most awful sound,” said the orang volunteer,”Like a long, high moan. He makes it before the keepers come in in the morning, just sitting by himself.”

Liam and I were staring at her now, tears coming in spite of ourselves.

She went on. Apparently, when Samantha died, the keepers laid her body in an area of the gorillas’ enclosure, then invited the troup in to pay their respects. The females and the youngsters all crowded around, at first trying to rouse her, then finally becoming calm and quiet. They touched her, moved around her, and then moved away. But Charles, who had kept a vigil outside her recovery room for over a month between her first and final strokes, never looked at her. He stayed near the door, gazing at the door, the walls, the ceiling, anywhere but her.

“He just gently swept his hand back and forth against the wall,” she said. “He couldn’t look at her.”

Liam had moved away, and was sitting hunched over with his back against the orang enclosure’s glass. After a few minutes, the volunteer and I had wiped our eyes, and moved on to less tender subjects. Suddenly, Liam was at my arm.

“What are they doing? For him… for Charles? How are the keepers helping him?”

Oh sweetie.

“There’s nothing they can do, love. He just has to go through this, and he’ll do it in his own time.”

Liam wasn’t satisfied with that, of course. And over the next few days, I wondered if I was, either, in spite of my, well, advanced age and wisdom. I wondered if there really wasn’t anything they, or someone, could do for Charles. He’d lost the love of his life… couldn’t someone help him a little?

I told Charles’ story a dozen times over the next few days, mostly because I couldn’t stop thinking of it. And my friend Drew, who is an artist, had a brilliant idea: why don’t they give Charles some paints? He is acknowledged to be an accomplished painter, having been introduced to painting years ago when going through another sort of emotional crisis, that time having to do with accepting another males offspring in the troup. Painting, in a room by himself for a part of every day, made him happy, made him peaceful. Why couldn’t they offer him that outlet again? It might just allow him to express some of the pain he so obviously feels, and maybe even lessen it.

True, I’m no gorilla keeper, and neither are Liam or Drew. But we think it’s a good idea. Who knows – a letter here, a suggestion there…. we’ll see. I’ll keep you posted. And if any of you know of a direct connection to the gorilla people at the Toronto Zoo, give me a ring, will you? Charles needs some help.