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.

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.

We were feeling a bit snowbound just after Christmas. Not everybody shovels their sidewalk and the snow doesn’t have to get too deep to be too much for a standard wheelchair (even a new purple one). So we brought out the Winter Wheelchair (AKA a Baby Jogger Special Needs Junior Outdoor Mobility Device. I’m not kidding.) This thing can plow through pretty much anything. Last year I even took it up Riverdale hill a dozen times while tobogganing with Jon (if I do it this year, it’ll probably be the last–he’s heavy and it’s steep!)

It’s not a perfect solution…Jon’s posture isn’t too great just sitting in the hammock (and it does affect him afterwards). But he loves the outdoors and we were all getting a little grumpy, and the crankiness literally diappears when we get out to the front step. It is a big emotional deal. So it’s all a balance.

Uh-oh. In the course of linking this post I notice that the Baby Jogger company has relegated the Special Needs series to their Non-Current Model section. Implying that it might be discontinued. This is a concern because within a couple of years, our guy is going to need a bigger Winter Wheelchair (ie a Baby Jogger Special Needs Outdoor Mobility Device). I hope they aren’t doing anything drastic.