[Jon is very enthusiastic about his new educational computer game called Math Missions. Among the activities, wandering around town on various transit and (not while) mixing smoothies]
I love going to go on the sub way train to find the crect stop before I poosh go. I put the money in the change box before I poosh go. I like megering 10 cups of juse and 10 cups of booster. First I set the clock to the right time before I poosh go.

Jon

[The second school creative writing assignment where Jon picks a photo from a wide selection and writes a story about it. This is his second time making up names for the characters–this time it took him 5 minutes to come up wiht the first name (down from 25), and almost no time to invent the second, giggling with delight]
Rabits are soft. I feel the rabit fer. I call him Eyes. I call her Beb. The rabits do eat broclley. I like them to play with me. I like the rabits. The rabits are going home to work on the computer.

Jon

I love going to watch Between the Lions. I like seeing Lionel and Liona. I like singing along with Mother reader. I love going to watch Tigerwords. He says he’s going to make the word truck.

Jon

I love going to visit my mommy and my daddy. I like going home in the car. The car started to moovve when daddy drove on the left. At home I love going to watch the cable local forecast. Daddy makes me laugh. I am going to visit my daddy. He is gone to the movies so I spend some time with my grandma. I like Watching videos with my grandma.

Jon

(Whoops, it’s been awhile since we’ve transcribed any of Jon’s stories. Here’s a couple. —L)

My Mommy and My Daddy are Different

I love going home because mommy and my daddy laugh. It is funny. They are going to have computer. I love going downstairs with them to do some spelling. I like going to play games on the computer. I am going to play Green Eggs and Ham and The Cat in the Hat. I love my mommy and my daddy. They love me. I hug my daddy and kiss my mommy because they love me.

Jon

The Winter

It was cold. I love throwing snow balls. I like going outside in the winter to go tubogning. I am going to the house to get warm. I love going to the snow to go looging with my mom and dad. We go fast when it’s windy.

Jon

In case pants up/shut lid doesn’t tip you off, this photo is SO posed. Jon would never read the Star’s business section. He’s a WSJ man.

For a parent of a disabled kid, when you first get the news, it is a massive blow. It requires a paradigm shift; the world has changed and all of the priorites get reordered. One of the bigger aspects of this sea change is a completely new view of childhood milestones. First-time parents, with nothing to go on but a raft of horror stories graciously told by their friends (“…and her water broke on national television”) tend to embrace the 3 million books on the subject (well, more correctly from my unofficial polling, Mom-to-be reads them and tells Dad-to-be which ones to look at and they sit on his side table untouched until the kid is thirteen). In these, you are told everything you are to look for from the first minutes on. Modern-day kids are judged with a calendar.

After months of this preparation, it naturally comes as a boot-to-the-head when you find out you won’t be playing by those rules. The milestones are nothing, worse than nothing since all of the other kids will be playing by them. It’s even more fun when you are dealing with developmental delay, a vague term to be sure, which basically can mean that if there’s a break in the chain of developmental events, many things can get held up for a while until that-which-is-behind catches up, or maybe never.

When you recover from the shock, which is not all at once and rarely complete, you realize that the milestones aren’t nothing; they are jewels, all the more precious because they may not come at all. And of course, even when you hit a milestone, it’s not over. That one domino in the developmental delay line has fallen, and other aspects now have to come online, catch up, pick your metaphor. It simply opens up new worlds of learning and new life tasks to master. In many ways, it’s after clearing the hurdle that the hard part begins.

Yes, I’m getting to a point. One specific little roadblock for us has been toilet-training. Jon took an enormous step this summer; since early August he’s been without a diaper overnight, and better yet, very few incidents. Steep learning curve. (Remember steep learning curves are the good ones.)

On Tuesday night as I tucked him in, Jon announced that he didn’t want a diaper on Wednesday. Given his night-time record, I took him seriously, but explained that it was a tad short notice, so I suggested Saturday. I nearly gave his teacher a stroke with the news, since I had forgotten to mention that we’d only do this on weekends for the time being. Sorry, Tami! With Auntie Patti’s help we guessed at an underwear size and on Saturday Jon went without for his first time. Now, yes, there is a certain amount of conditioning from nine years of doing things (in fact, the only way he’s ever known!) but I was surprised at how vigilant he has been. Mind you, as he gets more comfortable, things relax, and a momentary lapse or two can require a change of clothes. And so, the hard work begins–mistakes to be learned from, new routines to build.

But it’s an amazing start, and we’re delighted. And he’s so proud of himself! You can practically see the developmental wheels turning!