Totoro

In our never-ending quest to introduce Jon to new things we occasionally try to get him to watch DVD cartoons with us. He’s been pretty resistant up till now, which is odd because at school his class has “video day” every Friday, where they watch a whole movie—and he seems to enjoy it! He even saw (and told us he liked) The Iron Giant, which we then had to beg him to watch with us a few weeks back, since neither Peter or I had seen it yet!


Jon’s favourite scene in Totoro.

This week we thought he might actually enjoy My Neighbor Totoro, so we borrowed his cousin Meghan’s DVD and played the titles and end credits songs for him (Jon loves movie credits because of the music). Sure enough he got hooked and started playing the beginning and ending incessantly: Totoro, totoro/Totoro, totoro… Oy, what an earworm!!

For those not acquainted with My Neighbor Totoro, it’s a Japanese animated classic by the same man who made the more recent and famous Spirited Away (which won the animation Oscar). It is quite different from a typical Disney movie; much of Totoro is quietly contemplative, there are no villains, and the kids are portrayed fairly realistically. Totoro is a forest spirit that only children can see (and unlike Disney movies, adults accept this without disbelief).

On Saturday we took the plunge and got him to watch the whole movie. We try to make movie-watching a special event: We move the couch close to the TV, get snacks and snuggle under blankets. He got a little antsy during the last third of the movie, but he certainly liked it.

Friends Andy and Christine had suggested Totoro for Jon several years ago; we checked it out at the time, but found it was way too visual. In fact it was only in the past month that we felt that his vision and cognition were up to the task. Totoro does not talk; he only roars (usually with delight, but still), which made us question whether Jon would understand or freak out. But Jon loved the roars, and he immediately loved the Catbus!

In fact, he loved the movie so much he demanded a Totoro poster in his bedroom and gets a little ticked off when we tell him we don’t have one yet. Anyone know where we could get a nice Totoro poster or calendar?!

Banner day

We started this note Wednesday evening after a banner day for Jon. Such peaks generally don’t run much past the day they happen in, but this time, the momentum just kept going:

From Wednesday:
Jon’s just bombing ahead in his reading/writing: Today his teacher phoned us in an incredible high state of excitement over his latest sample of creative writing (this story was totally unprompted; the only thing the teacher told Jon was that in book titles each word is capitalized):

My Favorit Book

My favorit book is Dr Soous The Sneaches . I love The Sneaches story because they have stars . Those stars were not so big . They were small . My gramma reads it to me because she bot it for me .
Jon

Wow. No copy typing – this was straight into the computer from his head. She had reminded Jon before they began that titles and names required capitals, and a couple of times he made a query such as:
J: “Does The Sneeches have capitals?
T: “Is it a title?”
J: “Yes, so it has capitals.”

She did give him a couple of other prompts, such as “Tell me about the stars”

Another impressive thing was that Jon was extremely insistent that he write the story. He had a choice of “free time” (playtime on computer) or “creative writing” and he actually chose writing over free time.

Earlier, while he was reading with his teacher, a call had come in and she told Jon she had to go to the office for a minute and she’d be right back to continue reading, leaving him alone with book while the EAs in the room were working with other kids. A few minutes later when Tami returned, Jon was appropriately ahead in the book, reading aloud, having just continued with his task. One of the EAs confirmed that he was reading it, not cheating or skipping.

And Jon showed several other social and developmental flourishes today to boot. His teacher tells us that he’s pretty much fufilled his year’s lesson plan, so for the next five months, it’s gravy. And she had planned a tough course to start with.

Well, Thursday, Jon did it again. Another creative writing story at a similar length about his favourite game. His newly displayed talents had turned a few heads in the school too – he read his story to both the principal and the vice-principal, and it looks like this will change certain curriculum issues for next year.

My Favorite Game

My favorite game is Arthers First Grade . I play it when I have some free time at home . On the computer at home I first do some tiping . In the game I do letters with DW.

Jon

Come Friday, 10 minutes before lunch, Jon announced that he wanted to go to the computer. They all thought he wanted to play a silly game that he had played earlier, but he announced that he wanted to do some creative writing and would not be swayed. Tami offered to give him a title, but he already had one in mind “Hop, Skip and Jump”. When she pointed out that was the name of his reading primer, he replied “It’s the title of my story”. He continued his writing ten minutes into the lunchbreak, at which point Tami – who had been negotiating and pleading – physically pulled him away from the computer on his fifth sentence, Jon yelling, “But I’m not finished! I’m not finished!” as he clawed at the receding computer. Tami said they could finish after lunch, but Jon pointed out it was Video Day. Tami reassured him that they would start the video late so he could finish his story. And suddenly he was as happy as a clam: “OK, we’ll finish it later. It’s time for lunch. It’s pizza day!”

For this story there was only one direct prompt, “What did the little red hen do?”. He remembered that all titles have capitals. He remembered that periods immediately follow words, with no spaces in between.

Hop Skip and Jump

I love doing some reading. I like reading Come Out Puppy. I like reading Help Find The Bear. My favorite story is The Little Red Hen. The little red hen took the wheat to the mill. She made the bred and she ate it all up all by herself.

Jon

You never know when this is going to happen, when the little gold nuggets will suddenly pan out of the silt. Three days in a row is even harder to believe, and that is even more precious. He’s starting to show his own vigorous and creative spark; not just something by rote that we trained him to do. This is a pure chunk of Jon that he developed, all by himself. And it leaves us breathless.

Gone with the Wind(chill reports)

We all had a surprise this morning, and for Jon it was a nasty shock. Jon went to turn on the TV to get his morning fix of the Local Forecast before breakfast. He flipped to 518 to get the forecast in French; to his horror he was greeted by an onscreen box saying we weren’t authorized to get this channel. Zut alors! Météo Média was part of the digital channel freebie month last month! (We had no idea – we only discovered the channel two weeks ago.)

It was a very teary breakfast. I imagine that after school today Jon will be trying channel 518 in the vain hope it was all a nightmare this morning. He’s already hit all four of denial, anger, bargaining and depression at various times this morning; let’s hope acceptance isn’t far away!

Reading Update

I forgot to mention that about three weeks ago, Jon moved out of the three pre-primers and into a 150 page reading primer. The type size is slightly smaller again, but it’s the leading (the spacing between the lines) that is causing some stress. If Jon isn’t totally focused, he tends to lose his spot and jump from the line he is on. I know this is common for beginner readers, but it’s exacerbated by the cortical visual impairment: it’s is easier to see something if the visual field around it is empty. So we’ll have to proceed and see where we get.

One of the many “not-quite, but kind-of-like” metaphors for CVI is that it’s like looking at the world through a moving, rotating piece of Swiss cheese. It’s fascinating to watch Jon read, as he is constantly changing distance from the page, cocking his head and changing angles. Sometimes you’d swear he was looking at the other page! Anything to keep the words in view.

Lately the at home readings have been quite stressful for Jon, probably since he’s exhausted from school. Thursday’s late afternoon session took 40 minutes, including whining and attempted evasion, whereas at school, fresh and no-nonsense, Jon did the same text in 12 minutes on Friday morning.

Laura, his teacher and I had a chat about that and we’ve decide that for the time being, Jon won’t have to do reading homework from the textbook, but only from supplementals he’s being assigned. If he volunteers for more, fine, but the whole idea is to reduce the stress and anxiety of reading.


Here’s the a page from his current assignment, that he won’t necessarily be reading with us anymore. How will I find out what becomes of Joey?

His teacher thinks that this frustration, and certain evasions she’s seen, shows that we are approaching his current skill level in vision, in vocabulary and in reading skills. Which is great. The great strides of late have taken him to where he needs to be. Now the books will be introducing up to 10 new words a story. I personally think that the vision is slightly hampering things in an absolute sense, but given how far he’s come in the 60 days since he was reading 48 point type, I can’t argue with how we’ve done so far.

In the meantime, we’ll ease off on the gas a little for now. We want him to like to read. Especially if it’s always going to require effort.

Chelsea

On Friday, we headed up to Paul and Judy Mason’s house in Chelsea, across the river from Ottawa near the Gatineaus.


Paul and Willa and one too many genetic experiments.

Paul and Judy have built their house (and built with their own hands, aside from some sub-contracting, as in pouring concrete) in a valley right by Chelsea creek. In the winter, Paul really gets busy.


Judy and Jamie in their gorgeous kitchen.

First there’s the skating rink. Holy cow. It’s huge. Paul can correct me, but I figure it must be 20 by 45 feet at least. With boards. And a plywood cartoon goalie to cover the net for half-rink games. And lights strung up for nighttime games. And a clubhouse, a space-heater-heated dressing room in the garage that has benches and hockey poster and little cubbies.


View of the rink from the warm kitchen. It was -20° out there, but we did have a good game with a bunch of local kids.

Then there’s the luge run. A few years ago, I guess the kids had started tobogganing down the snow plowed off the driveway. The pile maybe got up to 8 or 9 feet high. They were drifting near to hitting the house, so Paul built a bank in the slide, and gradually it became a two-curve luge run. Last year, it was moved to its current, more extreme location…up the hill in the forest, which means Paul has to build a bridge across a drainage ditch each year.


Jon lives for luge.

Last year the first turn was–how to say it gently?–more wall than a bank, with many many poor lugers, myself included, not being able to make it beyond in one go.


Paul and Jamie come out of the new and improved first turn at a bad angle, and carnage is imminent.

The architect for this year’s run has obviously learned a thing or two from the red stains on last year’s course. It is fast, and well-balanced, with just enough variation for a little carnage.

Click to watch some carnage unfold.

We had a fabulous weekend. Jon and Laura especially, since I came down with a stomach bug thing just in time to miss a second day of luging on Sunday. On the way back, we stopped by our friends in Gananoque where Jon got his first TV of the weekend, and he discovered…well, why don’t I let him tell it? This is from his creative writing yesterday:

“I went to Ottawa on a trip with my dad and my mom. I went loojing. I went to visit tom and caroll. I wotched the wether chanel in french.”

Oh boy! Now Jon is hooked not only on The Weather Network, but on its French twin M�t�o M�dia.

Thanks so much to Paul and Judy and Jamie and Willa, the staff at the beautiful Mason Resort.

Bad choices

Uh oh, trouble at school. Jon refused to stand up straight while in his stander, folding himself over and lying on the table. After constant reminders, then warnings, he had to be timed out. After a couple of minutes, his teacher Tami went over to discuss things and asked if he understood why he was timed out.
“Yes,” he replied, “Tami made bad choices.”
“WHO made bad choices?”
Pause.
“I made bad choices.”
Later in the day, same deal, this time Jon continually jackknifed over his wheelchair, despite cajolling and warnings. Time out again. Discussion. “Tami made bad choices.” Here we go again.
Jon’s teacher suggests that it’s regression, which you sometimes see when you have gains elsewhere (and we are seeing wonderful reading and improved spoken sentences).
The theme of the day continued. When Jon came home on the bus he had gnawed a good sized chunk out of the book he was reading, something he hasn’t done in a year and a half. Sigh. I gently pointed out that means no book tomorrow. His shoulders sagged.
Inside, I asked him if any bad choices had been made today.
He immediately looked at me and said “Tami made bad choices!”
Rinse. Lather. Repeat.
On the good news side, his lousy day did not hurt his reading or spelling homework–a year ago a day like this topped off by book restrictions would have resulted in crying and tantrums. He seems to have compartmentalized these things.

Pretty elements

They advertise these as “The Most Beautiful Periodic Table Displays in the World” and, after spending a lot of time clicking on and reading about my favourite elements, I can’t say I disagree.

If you click on Hg (mercury) the text mentions Alexander Calder’s Mercury Fountain in Barcelona (here and several more photos). Beautiful, but I kept thinking “how the heck do they keep that open pool of mercury safe?” (I believe it’s behind glass, but still!)