KECC Update

Julie and I had two reassuring meetings this afternoon at the KECC. The first was with James's classroom teacher, Melinda, and her two helpers. At the regularly-scheduled meeting last month, we came away feeling a little discouraged after it seemed like we heard a lot about what James couldn't do without help, and Melinda, who can come across as a little brusque at times, seemed kind of frustrated about him.

So Julie set to work as only Julie can, talking to other parents and trying to figure out if James would be better off in another classroom. Along the way, she bumped into the Inclusion Specialist, Allison, one day—we hadn't known there was such a person—and that opened the way for a few good conversations that helped us clarify what exactly we were looking for and how we could best advocate for that.

After a lot of prep (again, mainly on Julie's part) we felt pretty good going in today that we had a solid, thoughtful way of approaching our concerns without making Melinda defensive. And Melinda seemed to have given the meeting some thought herself, as she seemed more patient and upbeat today about James's progress. (We actually suspect that Allison the Inclusion Specialist did a little working on both sides, but who knows.)

Melinda and the two aides told us today that James's awareness of his peers has really increased: he looks at them, sometimes goes to where kids are doing something he's interested in, and will even smile or giggle at their goings on. One of the aides told us that she intiated a game between James and another kid where they rolled a car back and forth to each other when she counted down from three and said "Go!", and James loved it and stuck with it for 10 minutes or so. They also said that James is getting better at following class routines, and said that even though he loves playing in the sand, whenever they say, "Line up, Ducks!" (since they're the Duck Room) James goes immediately over to the door to go inside.

The big thing with speech / cognition right now that they're working on is "Put on" and "Put in." Melinda enthusiastically showed us some of the toys they'd dug up for James, and in some cases modified, to help him work on this skill—as you would expect, lots of noise-making and cause-effect toys to motivate him. We also found out that he qualified for Music Therapy, which is wonderful, so he'll start receiving that before this school year finishes.

We also met with James's Discrete Trial team—the people who see him twice a week for one hour after the regular class day finishes. In the shortest possible terms, Discrete Trial is a system that breaks down actions or behaviors into their smallest parts, then builds to a desired behavior one step at a time through repetition and the careful keeping of data about what progress is being made. They've made big strides with James's throwing or sweeping things he doesn't want (especially food at meal time) away from himself, and with James trying new foods and textures.

They're also working on things like repeating gestures (patting a table, for example) and an early version of matching, where they put a cup and a Duplo block on the table in front of James, then hand him either a cup or a Duplo block and he's supposed to put what he's been given next to the match in front of him. Progress there is slow, but steady; I think they said his best day was 50%.

All in all, a good hour and a half at the KECC—we came away feeling great about James's being there. He has quite a team working for him.

The Learning Program

James is in a pilot program for something called The Learning Program. A group of kids with Down syndrome who are roughly James's age and their parents are meeting three times to test out the program and then they'll meet once a month in the fall.

The basic idea is to teach kids with Down syndrome how to read, beginning with pre-literacy kinds of activities. Julie went to an informational meeting last week, and then she and James had the first session last Saturday morning. We're learning the particulars, but I thought these guiding principles (given to us on a handy laminated card) were terrific—a good reminder for us about what James needs from us.

We each agreed right away that the first principle is our ongoing challenge. And the one about guilt is a welcome reminder too. It sounds like a great program, for James and for his parents.

Assume Your Child is Able
Research shows that one of the most important factors for learning success is a parent or teacher who believes the child is capable of learning. Your child can learn—your child will learn.

Make Learning Fun
Learning should, can, and must be fun. If learning is fun, our children will be enthusiastic and motivated to learn.

Success is Key
Our children need to feel successful in their attempts to learn. Use a positive approach for instruction!

Let Child Set Pace
Parents may become frustrated at lack of perceived growth—this is our problem, not our children's. Embrace their energy, go at their pace.

Teach . . . Don’t Test
Teach—give your child information. Resist the urge to make teaching sessions testing sessions.

Don't Let Guilt Get in the Way
Set a goal to work with your child XX minutes/week—if you reach it, great; if not, don't worry. Have a good attitude and try not to feel burdened.

Model. . . Don’t Correct
Use a positive approach by modeling correct responses. Provide feedback based on your child's effort.

How to Train Your Dragon

Luke and Megan and I went to see How to Train Your Dragon this morning—fantastic! Cousin Catie put us on to the books, and Uncle Brian has been telling us about the movie (from DreamWorks) for a while now. We saw it in 3D, hence the glasses. The 3D effects are amazing, and the story is terrific too. Luke gave it an A+++++ and Megan gave it 20 fingers and toes up.

I don't know if you can tell from the picture, but with the lenses dark in the theater Megan looked like a six-year-old Grandma Betty wearing sunglasses. I had almost as much fun watching her for the first 20 minutes as I did watching the movie.

There's a link to the trailer here.

Also, for anyone with kids, we use this website to see if we think something will be okay for Luke and Megan to see.

April is the cruellest month ...

That's from T.S. Eliot's The Wasteland—an opening that alludes to the opening of the Prologue to Chaucer's Canterbury Tales:

Whan that Aprill, with his shoures soote
The droghte of March hath perced to the roote
And bathed every veyne in swich licour,
Of which vertu engendred is the flour;
Whan Zephirus eek with his sweete breeth
Inspired hath in every holt and heeth
The tendre croppes, and the yonge sonne
Hath in the Ram his halfe cours yronne,
And smale foweles maken melodye,
That slepen al the nyght with open eye-
(So priketh hem Nature in hir corages);
Thanne longen folk to goon on pilgrimages
And palmeres for to seken straunge strondes
To ferne halwes, kowthe in sondry londes;
And specially from every shires ende
Of Engelond, to Caunterbury they wende,
The hooly blisful martir for to seke
That hem hath holpen, whan that they were seeke.

In Chaucer's poem, April is when the whole world regenerates itself after the death of winter: flowers, wind, crops, birds all return to life. And it's during this season that human beings seek spiritual regeneration as well—and hence, it's when folks long to go on pilgrimages to holy shrines like the one at Canterbury.

Eliot's poem, though, makes ironic contrast between the hope of spiritual redemption suggested by spring in an irretrievable past animated by Christian belief, and a spiritually empty modern world devoid of such belief or the animation it provides. Hence, April for Eliot is cruel because it "breed[s] lilacs out of the dead ground," not as a sign of new life, but as a cynical symbol of nature's cruelty: things are born only to die.

But mainly, April has been a cruel month for this blog, which has fallen by the wayside in the midst of beautiful weather, many family events, Easter, track practices and meets, science fairs, gymnastics practices, tee-ball practices and games, birthday parties, yard maintenance (neither Chaucer nor Eliot seem to have explored the rich symbolic potential of lawn fertilizing and mowing) etc. etc. etc. In other words, typical family stuff, but for some reason all super-concentrated this April and, judging by the calendar, May as well.

Soon I promise to have pictures and video of James at school, and updates about what he's doing with therapists. Also in the pipeline are reports about Luke's Science Fair prize and first track meets, as well as Megan's first tee-ball games. Most importantly, perhaps, will be information about this year's Buddy Walk, which has been re-named a clunkier but more awareness-specific Stepping Up for Down Syndrome event (i.e., the walk in Forest Park).

Apologies to the descendants of Geoffrey Chaucer and T.S. Eliot for this post. I thought it would give my brothers something to mock.