The Top Ten Things

JoyDad and I had a wonderful opportunity last Sunday to talk with part of Joy's community.

Our church invited us to give a presentation to the adult Sunday-school class, which is basically anybody who isn't involved with teaching the children's Sunday-school classes. This was our first go-around with an occasional series that they call "Families Living with Disabilities," where they've asked other families to speak in the past, to let the church community know where things stand with their child's extra challenges and how the congregation can help.

The church is already helping immensely. In addition to prayer support, there are also two rotations of volunteers who serve as one-on-one aides. Joy gets an aide during Sunday-school hour, and another for the nursery during worship (and for several minutes afterwards so that I can talk to people without Joy-chasing). Fortunately she rolls really well with having two different aides each Sunday, and different people on first Sunday of the month, second Sunday etc.

This was an opportunity to add to that, and fill people in who aren't so involved with Joy week to week.

So I wrote, and JoyDad and I presented, a 45-minute session with question-and-answer at the end. We broke it into five parts:

• Top ten things Joy is good at


• Chronology


• What are we doing now?


• How can we invite you to interact with and nurture Joy as part of this community?


• Question-and-answer

Both of us can get pretty chatty when we're on a roll, and the chronology part (what happened with Joy when?) had all kinds of opportunity for digression! We ended up cutting out most of the "What are we doing now" so we could get to the suggestions and still have time for Q&A, but it ended up working pretty well.

Here are some highlights!

First, the Top Ten list. We wanted to make sure that we started out with ability, because it's tempting to only talk about the "DIS." Here's what we offered as the Top Ten Things Joy is Good At:

10) Taking her medicine! (pills and liquid in an oral syringe, 3x per day)

9) Peek-a-boo (she’s just learned to cover her own face with the blanket too!)

8) Getting set for meals (climbs into her chair, buckles up, and puts on her stretchy neck bib)

7) Eating meals (she eats widely and enthusiastically)

6) Asking for more food! (operative word is "mo")

5) Post-diaper routine (opens the drawer, puts in the diaper cream, closes the drawer)

4) Physical strength (the girl has been a powerhouse since birth)

3) Running. Fast. [The link is to Auntie Run-at-the-Mouth, who just linked to us!]

2) Escaping. By running. Fast. (She’d be a great running back; she always finds the daylight!)

1) Winning hearts. Her smile and laugh are utterly contagious, and you just can't help but smile back.

Then here are some of the suggestions we made for interactions with Joy:

1) Get physically on Joy’s level. Example of a powerful exercise I did during Hanen communication-therapy training, trying to have adult conversation where one partner is sitting and another standing, or one is standing behind the other, versus both being at the same level. It's terribly awkward; face-to-face communication is the way to go. (Rhemashope wrote a lovely reflection this week related to this, called "Stooping.")

2) Pare your language use back to the basics, to get it closer to the point that Joy might be able to reproduce herself. Example of teaching a baby to climb stairs – you wouldn’t go all the way to the top and holler for the baby to crawl clear up... you go just a step or two above and encourage them from there. Instead of "Okay Joy, it’s time to put your shoes on now!" try – "Joy! Shoes on!"

3) Imitate her. Treat her noises and movement as if they have meaning, repeat them back to her and then maybe add your guess as to what they mean. Example: if she’s playing with her fingers and says "Grrrr," you could repeat back "Grrr" and imitate what she’s doing with her hands and then add "fingers!"

4) Take turns. She does something, you do something, then you give her an extra pause to see if she’ll do something in return. Keep your turns short, because her turns won’t be long either.

The presentation has been turned into a podcast (42Mb MP3 file, 45 minutes long) and posted online. I don't want to link to it here for all the world to poke at, but if anyone is interested in hearing it, e-mail me and I will send out the link on an individual basis.

I might not get to you till Monday, though. We're going to the lake again, to see the fall colors and help close up the family cabins for the season.