Jon’s braces began yesterday. What more to say? (Hint: I’ll find something)

Post-orthodontic casting, Jon thinks he’s Bono!

He wasn’t used to a lip protector, which held his mouth open abnormally wide.
Aside from a couple of short bouts of quick-breathing—not quite to the point of hyperventilating—he stayed calm and got through it just reasonably well. Nothing like the time he had a filling put in, and then replaced some months later, to correct previous errors. Both those times he turned into a BEAST. Seriously feral.)

Break time. Some of the anchors are bonded, but no bumpers or wires yet.

At the end of the three hours.

We’re due in next week to complete the top set—a couple more back anchors and a pair of bands on the back teeth. Meanwhile today, the morning after, Jon wasn’t exactly delighted to wake up with them. Nor with the cheery dad saying “Nope, they’ll be on your teeth for a couple of years, probably. I had mine on for longer.” He remained disgruntled. Heck, I didn’t even tell him about the crazy headgear I had to have!

Well, we’re well into Jon’s first week at his new school and so far we like what we see.

We were told mid-day last Thursday that Jon’s equipment would be moved to his new school the next day. Jon had a couple of orthodontic x-rays taken at Sick Kids on Friday morning; and as he was going to be without his computer, CCTV, stander and trike it wasn’t really worth him being at school in the afternoon. Jon said his goodbyes Thursday afternoon. And that was it for Jon’s 1-1/2-year career at Danforth CTI.

Hello, York Humber and a week of surprises!

On Monday, as Peter and Jon were suiting up for the drive to school the phone rang with the first surprise. It was the transportation company, telling us the time they’d pick Jon up that morning! I told the dispatcher that Jon was being driven by his dad that a.m. because the teacher wanted him at school early (8:30) the first day, but we were stunned: We assumed it would be at least a week before transport got its act together.

After driving Jon to school, Peter came home with the second surprise: York Humber has school uniforms! That was totally unexpected, as well as faintly embarrassing since we visited the school and never noticed the uniforms on the kids! The uniforms are realistic—no jacket and tie nonsense; instead, pullover zip top, polo shirt and sweatpants. Variations on what Jon wears anyway. Colours are a bit drab—black or dark green. At least dirt won’t show too badly.

The third surprise: Jon’s bus trip is actually 15 minutes shorter in duration than the one to his old school! This says a lot about the ridiculousness of his old route: Jon’s old school is 3 km away from our house and the bus took about 70 minutes each way. Really—we could’ve walked to his old school faster than the old bus ride took.

The last surprise wasn’t one for us, but it may have been for Jon: He’s getting regular homework again—the first time in many moons! You can almost hear the rusty gears grinding in his head as Jon gets back into border collie work mode. But he’s really enjoying it and looking forward to going to school each day. This is a big change, and makes it all worth it!

Warning: Contains X-rays of spines and hips and if you know what you’re looking for, even some intestines filled with what intestines are filled with. Yup, that stuff.

In other news, according to Jon’s orthopaedic surgeon it’s the end of an era for Jon’s hips. Jon was recently examined for both the state of his hips (the first surgery for which started this blog so many years ago) and his more recently-occurring scoliosis. The scoliosis is now the major concern, as he still has a couple years of potential growing to do, and we need to keep watch to see if any surgery might yet be required. His spine has curved ever so slightly more this year, 15 months since his last x-ray, but not enough to set the surgeon into action.

Mind you, we’ve already been in to contact with our wheelchair vendor and Jon’s board-assigned occupational therapist to get them alter some aspects of his wheelchair. Due to bad timing, this latest chair arrived during the summer of 2010, and his previous occupational therapist and vendor rep changed when he arrived at his high school, so there was no continuity to ensure that what they had originally recommended nine months before was working—and as it turns out, some of the new touches weren’t appropriate. (We understand this aspect; every individual with CP has unique issues, and what works for one will not necessarily work for others. Therefore, more attention is needed.) And now, with a second school move, we’ll be changing therapists again. So we’ll have to stay proactive on this one.

But in end-of-an-era news, Jon’s hips got their final major x-ray. The hip’s growth plates are now fused, so there’s little likelihood for the metal hardware buried inside his femurs to shift. Both the pelvis and the femurs look good, have finished growing nicely since his most recent surgeries of five years ago. And with that, this particular worry in life is over. Any further growth will be in his legs or his torso (adding more strain to his back). So while the hips fade away in concern, we must be vigilant about his back (as much as we can, in any case)

Let’s take a tour down Hip-storical Avenue, shall we?

(pun copyright ©2012 Peter Cook)

2001

Before

As we’ve said before, femurs don’t grow bent, they and the hip socket grow and develop that way by the toddler owner running around on them. Jon didn’t stand or run enough, so they never could set properly.

Surgeon Plans

This is the surgeon’s quick sketch of his plans (made for inquiring parents. Notice the number of IKEA standard parts is reasonably low.)

Post-Op

Afterwords. It looks a little drastic at this point, but notice the cool rebuild.

…And 6 weeks later

It’s all looking way better. At this point, all concerned had hoped that Jon could have enough physiotherapy to achieve proper development in time. (Note: that was about the time Mike Harris took over Ontario, introduced massive cutbacks in education and instituted that physiotherapists for special needs kids could only advise—no hands-on therapy. Jon’s school had 5 or 6 therapists, and after his first year they could no longer directly participate in the their physical therapy.)

The intervening five years were a bit of a blur hip-checkup-wise, but at some point we were offered the chance to go to Bloorview MacMillan to get Jon’s X-ray instead Sick Kid’s orthopaedic clinic (imagine 30-40 folks in one room, milling staff, long lineups for X-rays, etc.). We were told that each X-ray taken was forwarded to Sick Kid’s for examination by our surgeon, but somewhere along the way, be it before or after we were assigned a different surgeon, the X-rays just stopped getting to where they had to get to, and Jon’s growth was shifting the blade plate…

2006

The Leg Break

It won’t go into the detail of the break-on-vacation, the misdiagnosis by Vancouver Children’s Hospital, or the eventual-but-delayed surgery at Sick Kids in Toronto…

…but to say that Jon’s right leg was repaired, and it became clear via the X-rays that it was time do his other one too. They did that about six months later.

2007

Late 2011

And here we are. In shots like this, remember that you are viewing it three-dimensionally so that the upper part of the “L-Bracket”, called the blade plate, is entirely embedded in the bone. Nothing is jutting out. The side portion of the bracket is on the outside, affixed by screws.

So that’s it for Jon’s physionogmy for a while. Let’s hope! 🙂

Glad you asked. This fall has been spent trying to get a few ducks in a row.

As of late last year, we decided to move Jon to a different school. Although there are some decent staff at his current school, their education plans for Jon never really crystallized, and there was always some aspect of equipment, school layout, and other sundry issues that were always holding things back. None of Jon’s classmates are at his level, and have completely different challenges than him. In the end, the school just clearly isn’t appropriate for his needs, educationally, physically and peer-wise.

Although provincial education regulations specifically state that a disabled child’s educational needs must be provided for, the Toronto District School Board (TDSB) has created some policies that make it difficult to alter a student’s placement or even find out about other specific options.

We’ve posted previously about the assignment of Jon’s high school at the close of his elementary school year. It wasn’t an ideal placement: offered late, with much board reticence to allow us to see other placement options for Jon.

This late offer turned out to be because of a sudden shortage of placement positions in our quadrant of the city, caused mainly by the board selling an entire high school. West Toronto was the best adapted high school to special-needs kids (like Jon) in the TDSB’s entire South-West sector. In fact, it was the only dedicated special-needs high school with complete wheelchair accessibility in the old “City of Toronto” proper; the other equivalent schools are in Scarborough, Etobicoke and North York, and at that they are towards the outskirts of our metropolis.

So, with some very helpful strategic advice from parents in a similar situation, who fought a very similar battle last year (and who shall remain nameless in this blog), we began. We’d been warned that this process would likely be taxing, so to avoid having it stealing too many resources from the rest of our lives (other personal events of 2011 had already done that, thank you very much) we assigned a single operative for the campaign. Peter would act as the primary, allowing Laura to focus on work, rather than the arbitrary “logic” of school board bureaucracy. Also in this way, Laura would not enter the picture until it was coming to a close or she was needed join the battle.

Peter started The Quest for a Placement More Appropriate To Jon’s Needs (tentative movie title, but the producer wants to call it We Bought a Tinker, Tailer, Soldier, and The Muppets!) on the first day of school, September 6. By mid-October, Peter ended up facing a panel of approximately 14 administrators and staff of Jon’s current high school, as per Board policy. One was openly sympathetic to Jon’s needs for a new placement, another …opposed? …played Devil’s Advocate? —we’re still unsure. In the end, Peter put forward a strong case and heard one member of the panel openly say that he was right (nice to hear!)

To be clear, we never felt that anyone at the board ever actively worked against us. As the gears ground along, two or three were quite supportive, giving Peter secret advice or simply working hard to find a good placement. But the procedures set by the TDSB allowed this to drag out longer than necessary. Part of this is the relative scarcity of “congregational” schools: schools dedicated to a specific select group—in Jon’s case, the physically disabled with their mobility and assistive equipment. Of course, because of this equipment, these specialized schools have lower student densities than regular schools (bizarrely, provincial school funding is based on square footage/student density). The school board, hard up for funding, has taken to selling infrastructure on more expensive land, and placing specialized (low density) schools in areas with a lesser land value. Add to this is the fact that both the TDSB and the Province of Ontario are officially in favour of reducing congregational school in favour of “integrated” (i.e. regular) schools. This is the world we live in.

But we digress. We seem to have reached a happy conclusion: sometime early in the New Year, Jon will be attending York Humber High School at Jane and Eglinton. Its accessibility is scads better than Danforth; staff (judging from several we encountered during a visit) are highly energized and motivated, and clearly care about the students. Prior to our first visit staff had already started discussing specific teaching options for Jon’s strengths and weaknesses. Because the school serves a range of kids from developmentally delayed (DD), through Mild Intellectal Disability (MID) to Learning Disabled (LD), they have a range of learning options for Jon, and more social opportunities.

The one disadvantage about the school is that it’s 15 km away from home, on the west side of the city. This means Jon will have a lengthy commute, one that crosses the centre of Toronto. It took us 45 minutes to get home from our visit; how long will his trip in rush-hour traffic take every day? (Then again, this year his bus is taking 60–75 minutes to get from his school 3 km away—so who’s to say which will be faster?)

The school’s forwarded an offer to us, and we’ve signed it.

We say that Jon will be attending the new school “sometime” in the New Year because the move depends on when his assistive devices (computer, keyboard, scanner, CCTV, stander and tricycle) are moved by the TDSB (as they are board-issued, Peter is not allowed to move them himself). But as of just before the holidays, none of the involved parties (old school, new school, board) seemed to know who’s responsible for transferring the equipment, or arranging his new bus route. This may yet take a few more phone calls and emails on our part. (Or maybe it will go just fine. Who can say?)

In the end, the most ridiculous thing is that everyone in the system has remarked to us how exceptionally fast Jon’s case has been resolved. If that’s fast we’d hate to see protracted!