KATE'S KAUSE

Communication leads to community, that is, to understanding, intimacy and mutual valuing.  ~Rollo May

3/10/2013

 
Our first 4 days with intense PODD modelling!

I spent last weekend with some very influential and inspiring moms who are parents to children with Angelman Syndrome. We got to learn from Caroline Musselwhite, an amazing literacy and communication expert. I also spent some great one-on-one time with my Californian friend, Tina Thompson, who has effectively implemented PODD communication with her 5.5 year old son. Tina and her son are inspiring!

When I came back from my weekend away, one of the first things Kate did was say Mom-ma when we started conversing. She’s such a smart girl!

Tina reminded me that it is so important to assign meaning to Kate’s communication efforts, whether I’m right or not. They be in her PODD book, sounds, gestures (including arm flapping!), or movements (Kate leads us to what she wants, usually bath, because she is non-stopping walking with us). I’ve been so conscientious of this over the past 4 days and it has made a HUGE difference in Kate. Well, more accurately, it has made a HUGE difference in the connection I have with Kate, her success at telling us what’s going on from her perspective, and her overall happiness. She seems a lot less frustrated.

The first day I used the PODD, Kate had a bad night (up 3 hours) so she slept in. This gave me lots of one-on-one time with her. I took her PODD upstairs with me and we modelled dressing. Then we modelled time for breakfast. She ate well (big surprise) but was shout-crying at me by the end. I did: you have something to say (bracelet): more to say: something's wrong: and said you're feeling sad and upset. She slammed her hand down on TIRED, which she definitely is!! Intentional or not, I was able to assign meaning to her communication. I said oh Kate you're tired. She grinned and stopped shouting. cool, eh?

At preschool that day, we arrived when the teacher and Kate’s fellow students had the chairs arranged to form a bus to do the Wheels on the Bus song. I put Kate on a chair and proceeded to sing along with the teacher. She was engaged, smiling and looking at her classmates and teacher. After about 80% of the song was done, Kate reached for me and got really squiggly. She was DONE. I told her that I understand she’s telling me she’s done and wants to move around, but the song is not complete, so we will wait until it is done. She then reached for her resource aid (B) with 2 affirmative out-stretched arms. We laughed and I restated that B also understands that she is done, but we have to wait until the song is over. Kate then tried to wiggle right off of the chair. I then touched her leg and said it again. She made it to the end of the song…well, pretty much the end of the song!  ;-)

The next day, I took the PODD book out to a restaurant for lunch. Kate hit her hand on MORE.

The following day, Kate’s resource aid at school said Kate had the best morning. She was focused when B used her ALDs and completed a whole book as well.

The big thing here is that I have changed the way I am interacting with Kate. It’s like I forgot what I was supposed to do as we settled into our life with an AS diagnosis and the seizures and sleep disorder that came with it. Last weekend, I was reminded that young infants only have about 20 min of conversation directed AT THEM during a day…that young babies and toddlers learn language through MODELLING. They learn from what they’ve heard around them, not only from what was spoken at them. Kids pick up things in their periphery environment. I can make so much of Kate’s sounds, gestures, and movements. I honestly haven’t done a good enough job of this.

The other day, as I took Kate up to her room for a pseudo-nap, she noticed the snow falling outside. I picked her up to look at it and told her that I can still remember the exact moment when I know Kate first acknowledged the snow falling. She was 8 months old. We were outside, Kate was wearing the bear snowsuit, and it was February. As I shared the memory, Kate snuggled her knees into me (which she doesn’t do much anymore because she wants to walk so badly), put her arms around my neck, and put her head on my shoulder. It was a unique connection. 

Doors are opening for Kate and she’s ready to walk through them…literally! Kate is intentionally or unintentionally identifying something in her PODD every day. All that matters is that we assign meaning to her efforts and model. I have a great feeling about this! 

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    Kelly is Kate's devoted, caring, Type-A mom. Kelly is a high school physics teacher who earned her masters degree in neuroscience from McMaster University in 2003. 

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