Wednesday, January 5, 2011

Included: Gifts in Her Name, Words in Her Mouth

This Christmas Joy and Rose both brought gifts home from school for their parents. Rose's gift to JoyDad was especially fine -- a calendar with the following image:

Calendar from Rose
"Hot peppers are red
Your guitar is blue
You are my dad
And I love you."

As far as gifts from Joy went, it felt like something of a new era. There was a little "I (heart) Mom" pillow for JoyMama, a calendar for JoyDad (what are they trying to tell him?), and a lovely pair of red beeswax candles for both of us that we've been lighting for a festive touch at meals.

Gifts from Joy

It felt really sweet to get gifts from Joy. I was happy to see the inclusion aspect of it too -- this was something the rest of her classmates were doing, something the teacher had thoughtfully organized and parent volunteers had facilitated. I witnessed some of the other kids taking their turn to make candles and saw as how it was mostly grown-ups doing the work, though I think the kids were proud of "their" candles.

I do wonder to what extent Joy had any idea what was going on. She may or may not have been able to have any hand at all in the making of them.

I have some similar wonderings about another procedure that's a regular part of Joy's school day. It's the routine during circle-time at the beginning of the morning where the kids take turns standing up and sharing their news since last they met. Joy participates in this via a GoTalk 4, on which we can record spoken messages that play back when she pushes a picture-button. The standard picture for "news" is a star. (The other button you see on the image is how she says "yes please" or "no thank you" to hot-lunch for that day.)

Joy's GoTalk
As with the gifts, this is a routine with a very sweet feel to it. Every morning, I come up with something for her to share. Monday it was "My Grandma and Grandpa came to visit from Kansas." Tuesday we had "I sat on my new rocking chair." I always try to make it something relatively normal-sounding, that the other kids can relate to. After all, this is one of the few consistent times of the day they'll be in one another's company! Rose provides the voice, and does a fantastic job. Joy's teacher and I are both charmed at the way Joy "speaks" in her sister's voice.

The benefits of this are many. Joy gets to take part in a classroom routine. Rose gets to help her sister. Classmates get a little window into Joy's world.

And yet, we're putting words into Joy's mouth every day with this routine, words she did not choose. Words that she can't (yet) choose. Is this befitting the dignity of a six-year-old human being, who does after all have her own thoughts and feelings and opinions? Is it that much different than if one used the GoTalk to make your favorite dolly "talk" by hand-over-hand causing dolly to push that button?

I'm not entirely sure. At this point, I feel we can justify it from a "fake it till you make it" perspective -- one day Joy will learn to share her own news, while dolly never would! -- in addition to all the other positives I pointed out.

As with everything we do in service of inclusion, we'll have to keep re-evaluating as we go.

14 comments:

Anonymous said...

JoyMama,

As a writer, you have an extra heightened sense of the creative tension, I bet!

-another writer

Lynn said...

This is the constant quandary of inclusion no? Are they just being led around by the nose with no understanding of what's going on? I'll be joining in on the hand-wringing when Audrey is mainstreamed.

JoyMama said...

Hello anonymous writer friend -- so good to hear from you! :-)

Lynn - one of the many things I appreciate about blogging is getting to hear about kiddos who are in situations both different and similar to Joy's.

rhemashope said...

when hope is playing one of her pretend games and trying to include rhema, she always speaks for rhema. *i* often speak for rhema. and i feel the same way you do - a little uneasy about putting words in her mouth.

but i can't tell you how it melted my heart to read that Rose does the GoTalk in her sister's voice. yes, one day Joy will share her own news. until then she's got the person ever sharing a piece of her with others.

TherExtras said...

You ended on exactly where I would've - re-evaluate often. Have the confidence to change when it seems right.

"Putting words in Joys mouth" - but with her having the choice as to whether to press the symbol - right? Is Joy included in the preparation and recording by Rose? (like homework)

I especially like Rose's picture of JoyDad. *wink*

Barbara

Anonymous said...

I think Barbara's onto something- we ALL use words devised by someone else (Shakespeare gets a lot of the credit- and insert Sarah Palin joke here)- we just choose which words to use in what order and when. She's choosing to use a star and when to "say" it. She's communicating.

Anonymous said...

(That anonymous is me- Professor Mother www.professormother.com- for some reason Blogger isn't letting me put my usual web site... )

Bethany said...

What if Joy had two different events that were recorded on her Go Talk that she could choose from every day? Would that eliminate some of the sense of putting words in her mouth because she would be choosing which one to share with the class? And the social benefits are tremendous, as you listed, and it reinforces for the other students that Joy is more like them than she is different. I love that you use Rose to record the message - if anyone can give Joy a voice to borrow it is her sister!!

JoyMama said...

Excellent comments!

Barbara -- I very much need to do better on making sure that Joy is well-included in the process of recording the GoTalk news. Thank you for the nudge.

Professor Mother, I've actually made the "using others words" point myself when it comes to echolalia -- I suppose I didn't think to connect it here because I'm not sure how much the choice of pushing the button means to her. She likes to push buttons that make noise... And, does she even have much of a choice in class, when it comes her turn and the GoTalk is placed in front of her and she's asked to give her news?

Bethany -- I like the idea of a choice, but I'm not sure that the extra work makes a lot of sense without a) an understanding of what's going on in the first place and b) a meaningful picture-indication of what the two choices entail. If I use a red star and a yellow star, and the news behind them changes every day, what would it mean for Joy to choose red over yellow, or vice versa?

JoyMama said...

rhemashope -- what a neat image of Hope speaking for Rhema in pretend-games -- I've been told I used to do that with my younger brother when I was a wee lass! I am trying to remember if Rose has ever done that with Joy, and am strangely drawing a blank. It may just be that Joy has never hung around compliantly long enough to be a useful imaginary-game partner...

Miz Kizzle said...

The things Joy shares with her class are absolutely appropriate, IMHO. After all, they're things that happen to her and activities that she takes part in. It's not like you have her making a lengthy monologue about man;s inhumanity to man or the virtues of Coke over Pepsi.
Long ago (before I realized that I'd make more money as a lawyer than as a teacher and catch fewer colds in the bargain) I taught nursery school. We kicked off the morning routine with Circle Time, much like Joy's class does.
Oh my stars! The things some of the kids shared were lewd, dubious and frankly frightening.
We learned that Tanya's mother smokes little cigarettes with her friends and laughs a lot.
We learned that Ryan's dad was away overnight but Uncle Dave slept in Mommy's bed to keep her company.
We learned that Keisha's father was i jail but she wasn't supposed to tell anybody.
Believe me, you're much better off with reports of grandparents coming to visit and rocking chair sitting. And I bet the other kids are fascinated by Joy's talker.

TherExtras said...

In terms of speaking for each other in 'pretend play' - isn't that a lot like playing/learning with puppets?

With some more thought on this....believing in the power of repetition, perhaps Joy needs repetition of the whole experience in order for her 'find' her voice - ? Repeating myself here, you will know when this method is not giving her what you expect (re-evaluate) at which time you can ask for different teaching methods.

Since this scenario is so much in the communication arena, what sayeth the speech therapist involved with Joy? Barbara

Anonymous said...

As the SLP involved with Joy I will chime in!

I remember the first time using that strategy with a student having the same qualms - but she's not SAYING it. After seeing the smile on that child's face and their excitement to push the button I realized, she WANTED to say it and was happy we provided a way she could.

Miss Joy is not in the 'big smile I'm so glad I'm participating' place but she IS participating and we must assume she WANTS to communicate. (I often get annoyed when I hear people describe people with Autism as reluctant to communicate or who don't WANT to or aren't interested in it...) I feel people with Autism want to communicate, but you need to meet them where they are, communicate with them the way they know how.

So yes, I'm glad we're having Joy participate in this way and I hope for improvements (longer time with her peers, more intentional/self-motivated pushing) with more practice and experience with it.
I'm especially happy it is recorded in a child's voice and is really quite similar to what the other kids might say.

JoyMama said...

Miz Kizzle -- welcome! My, you have some tales to tell. If Joy had been in your class, it sounds like I'd have had to spice up her GoTalk messages in order to fit in! By the way, we're a Pepsi household, but she'll drink Coke too. Maybe I'll put that in a future news.

TherExtras -- ask and ye shall receive! :-)

Anonymous SLP -- wow, you're fast! (Confession to group... I told her she'd been summoned. But still.)