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Ta-Da

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.

2 comments to Ta-Da

  • Ola

    Oh Regan. This post brought tears to my eyes. Your love for your boys is so evident to me as a casual bystander/reader that I know they will do well just by having you in their lives. I’m sorry for the diagnosis but glad that Rory can now get whatever extra help he may need. You have a magnificent and wonderful family.

  • sharron hanna

    I’d been so anxious to learn the outcome of the assessment. The absence of an immediate update post had me more anxious. I wasn’t sitting near enough to your Dad at the restaurant dinner outing to ask him what the upshot was when he was here with P-A last weekend. ANYWAYS now that the diagnosis is in I know you and Rob will forge ahead with unbounded love, caring, fortitude and unparalled patience for your trio of awesome young boys. HUGE HUGS…S.

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