In our last eye doctor episode, Dr. Wiggins confirmed that Jon’s eyes had stabilized (somehow) back to a focus point where he didn’t need glasses, but that we should be watchful in case he suddenly started squinting or leaning over to try to get closer—especially during the sudden growth segment of puberty. This alert was based on the fact that:

1. Jon has already been nearsighted;
2. Jon has two parents, in case no one noticed, who wear glasses for nearsightedness.

So come November, we started seeing such behaviour occasionally, while Jon was watching TV, etc. We kept watching for it, and although it wasn’t constant, there definitely did seem to be something going on. By mid-December we booked an appointment for last Thursday.

So what’s the upshot of yet another trip to Waterloo, to visit the good doctor and his pair of students? Nada. Nuffink. Jon’s eyes focus at exactly the same prescription as previously (for the record, ever-so-slightly farsighted—but nothing that requires glasses). We were slightly perturbed. I began to apologize for taking up their time and Dr. Wiggins stopped me. “I asked you to watch out for a particular behaviour and you saw it. You didn’t call the first time you saw it, you kept on the lookout and saw it repeated a number of times. I told you to call me if it kept up. It turns out that it’s not Jon’s ability to focus. But it could have been an entirely different outcome.”

The doctor speculated that given that the eyes are okay, it’s likely CNS (central nervous system)-based, a pretty solid call given Jon’s cerebral history. This suggests that the wash of hormonal activity happening around Jon’s body is affecting the development of his visual cortex. Not a huge leap of logic, that one. But yet another fascinating chapter (to us, anyway) in Jon’s growth.

When last we mentioned Jon’s math situation, 19 school days ago, Jon had been learning addition of two-digit numbers. In the not-overly-long time since then he has:
1) Moved quickly on to three-digit addition (since once you’ve seen one carry-over, you’ve seen them all!)
2) Been moved on to subtraction: first they reinforced stacking, of course, then Jon’s teacher taught him borrowing. This most challenging part of math thus far was taught at school, and I don’t know the specifics. And that bugs me because I’d love to know how it was explained to Jon so plainly and directly that he just picked it up.

In any case he did pick it up, and the next two week was spent cementing the concept of borrowing for two-digit numbers. I think there was the occasional three digit equation in there too (he and I did homework together). In any case, on Thursday Jon was given his first math test since learning multiple-digit addition and subtraction. And he got 11 out of 11. And this includes the last question which was something on the order of:

104 – 47=

This problem requires borrowing over two columns. But that didn’t faze Jon.

The only blockade seems to be the single number additions and subtractions. It’s taking him a very long time to commit the minor computations to memory. While that stopped other teachers on the spot, Jon’s current teacher says, “He can figure that out with a number line or calculator. In fact, realistically, most people use calculators to do almost all of their addition and subtraction.” The fact is that beyond the single digits Jon has no trouble with the computations of tens and hundreds, and presumably beyond.

Friday, Jon’s teacher asked if I had any ideas as to what to proceed to next in math, no doubt just to get my input. I metaphorically lifted my hands and stepped back. I explained that as far as math was concerned, he had already exceeded our expectations for the year, and that I was not in a position to recommend where to go next; we fully trusted him. Quite frankly Jon’s current teacher seems to be an equal to Jon’s spectacular teacher from three years ago (who took him from basic early reading and spelling to a grade three level in both) and in this case I know when to get out of everyone’s way.

Go Jon Go!

Nov. 14 2009

Daddy drove me to the Royal Winter Fair. We took the elevator from the parking lot. I saw some farm animals. I saw cows, horses, sheep and pigs. I had a back bacon sandwich for lunch. Later I had chocolate Ice cream on a cone and an apple dumpling. Just before we left the fair I bought a piece of chocolate nut fudge. I had a good time at the fair.

Jon

During Jon’s whole academic career so far his teachers have always commented on the huge differences between his strengths and weaknesses. His strengths have always been basic word skills; his spelling level has been only slightly lower than his proper grade level, and his reading ability certainly outstrips by several grade levels his actual comprehension of the material.

On the other hand, the one subject where Jon has had very little success is arithmetic. He just never “got” addition and subtraction. For the longest time he assumed that there was some sort of trick to it, that there must be some way of spelling the numbers to get the right answer. He never really understood that addition requires a lot of rote memory—that 2 + 1 always equals 3. For years when asked a simple sum he would answer by randomly guessing a number. As well, most math aids required either visual acuity or manual dexterity, both of which Jon had in short supply.

Tami, Jon’s wonderful teacher who helped him successfully crack the nut of reading several years ago, didn’t stress math too much as she felt (and rightly so) that she should strike while the iron was hot and make as much literacy progress as they could. Unfortunately, then followed a couple of teachers who tried to develop Jon’s social interaction side—somewhat to the detriment of academics, especially in math.

The last teacher did, however, find a couple of math aids that piqued Jon’s interest: The Mathline number line (sort of a mashup between a number rod and an abacus) and the Think-It-Through Learning System, which uses a shallow case with tiles that you use to answer simple math problems from a booklet. When you’re done with the 12 questions, you flip the case over to see if the coloured shapes on the back match the pattern on the answer key. Jon loved doing his “math puzzles” at school, so we bought a set and number line over the summer*. We were delighted to see Jon starting to memorize certain 1-digit sums (+1; +2; as well as doubled numbers, e.g. 3+3, 4+4, etc.) and hearing his excited yell, “I didn’t have to use the number line!”. Now he’s starting to lock in addition combinations that are less regular. He’s starting to get the commutative property too (3+6 = 6+3), but that’s not fully there. He doesn’t quite see it as a freebie, yet.

Since the summer Jon’s started the new school year with a new teacher who’s pretty gung-ho on the academics. All of a sudden, Jon’s been coming home most nights with homework in new subjects (for Jon) like history and geography, as well as reading comprehension. As for math, we were gobsmacked when we visited the classroom and saw the teacher whacking his pointer on various 3-digit numbers on the board and asking Jon to expand them (e.g. 341 = 300 + 40 + 1). And Jon was shouting out rapid-fire answers like no-one’s business. Even when it wasn’t his turn to answer. Nerd!

We were even more astounded three weeks later when Jon came home with homework of adding two 2-digit numbers together. We figured this was way too advanced for Jon and had to be a mistake (especially since it was sent by a substitute teacher that day). No mistake: After thoroughly learning about expanding numbers and place values, Jon was now able to do 2-digit column addition: Add up the ones column (using any sort of calculation aid if necessary), carry over the 1 to the tens column and add those up to get the answer. With the help of his number line, Jon roared through almost 20 addition problems, smiling all the way. Amazing!

* Because of Jon’s specialized needs, we’ve had to buy a lot of things online. With a few exceptions, most of our purchases end up being from mom-and-pop vendors from the US. Unfortunately, looking for some of these educational tools online is kind of creepy because you have to wade through a lot of home-schooling websites (and their attendant weirdness) to find the vendors. Talk about an alternate universe! ↩

It’s been a while since we’ve had any new concerns about Jon to worry about, but after our latest appointment with his orthopedic surgeon, now we do. The latest x-rays reveal that Jon has scoliosis, a lateral curvature of the spine.

Skeletal distortion is not uncommon in people with cerebral palsy: because of damage in the nervous system, their muscles are often “turned on” constantly. (As a mental exercise, tense some of your muscles, then imagine that it’s a permanent condition. But it needn’t be so complete: perhaps it is just a section of muscle, or a fraction of the fibres in one particular area.) This constant muscular pressure can be intense enough, over time, to gradually distort bones. Jon already shows some skeletal distortion, primarily in his feet and legs. But there is something slighly unnerving about seeing this distortion in the spinal column, in black and white on the x-ray.

How exactly is Jon’s CP affecting his spine? If we run our hands along Jon’s spine it’s easily felt that there’s a bulge of muscle running down the spine on the left, but not on the right. The bulge is a regularly-innervated lateral band of muscle; the other side’s muscles reflect where those particular neurons got damaged at birth, so can’t be used to articulate those back muscles. And so they can never develop.

Gradually over time, a small section of strong muscle has pulled and twisted the lower vertebrae. According to the doctor, the scoliosis has been developing longer than its sudden appearance suggests. Those muscles have been tugging subtly behind the scenes for a while, too subtly to be seen in the past by physical observation. No doubt its dramatic entrance to the big time is due to the sudden adolescent growth spurts and the increased weight of his torso that has to be supported (as you grow two-dimensionally, your proportion of weight grows three-dimensionally).

So what’s to be done? Exercise is always good, and Jon certainly needs more than he’s been getting. We and our school physiotherapist are trying to get a number of things happening when he’s at school. But it won’t undo the curvature already present, and won’t realistically stop any increasing distortion. Braces have little effect on kids with CP, since the huge pressure on the vertebral column is internally generated and won’t be stopped by a mere brace. Jon’s spine curvature isn’t severe enough for surgery. So basically there isn’t really anything we can do other than watch and wait until his teenage growth spurt finishes. Only then will we be able to determine whether his scoliosis has grown severe enough to necessitate an operation or any other kind of intervention.

Just one more worry in the all-you-can-eat buffet of concerns that is Jon’s life.

Yup, a teenager. A shade taller than 5’2″, 52 kilos (115 lbs)