We continue to model PODD on a daily basis with Kate. I'm getting really good at it and feel more confident every day. It's become so easy to think of things to say...it's now second nature as I've now learned to talk to Kate with her PODD.
Two days ago, Kate was very upset during breakfast. I tried to figure out what was bothering her, figuring she wanted more food fast (hurry up: more: food). That didn't work, so I told her I think something's wrong in her PODD. As soon as I got to "something's wrong", she hit her palm on "grumpy". Without a doubt, she sure was grumpy!
Today I was cleaning dishes in the kitchen. Kate crawled up to me, pulled to stand and walked me to her PODD (a FIRST!).I modelled something to say. Kate selected "I'm telling a story" and then "It's a secret". I tried to find meaning to her efforts, so tried to imply that Daddy must have done something on the weekend while Mommy was working. However, I must have been incorrect because Kate crawled away. She went to the bathroom. When I caught up to her, she had peed in her pull-up. I put her on the potty with no success. A similar thing happened less than an hour later. Kate led me to the bathroom but had an accident while she was in there. This is the first sign she's made at attempting to communicate bathroom needs. We are making progress!
Don't walk behind me; I may not lead. Don't walk in front of me; I may not follow. Just walk beside me and be my friend. ~Albert Camus
Today I tried acupuncture for the first time because I'm getting terrible headaches. The chiro asked me to identify the greatest pain I ever felt. I thought she might think I was crazy (yes crazy, are you surprised?!?) if I told her the greatest pain I ever felt was my heart breaking during the spring/summer of 2010 while we tired to figure out the root of Kate's delays and accept her eventual diagnosis. Watching our recent videos of Kate walking reassures me that I'm probably wrong about that.
We are definitely on a "high" right now. Life is good. Our kids are more amazing than we ever dreamed possible. And Kate is a walking machine! We've waited 3 long years for this moment and watched countless younger children achieve developmental milestones before Kate. As a parent, this is hard to do. Right now, we will bask in the glory of this achievement for a long time. Please forgive us if we seem over exuberant! It's our time to brag and we are overly proud! ;-)
Update on our PODD efforts:
All in one day, Kate told me she wanted to do what the others are doing, she wanted something "new" (there was a box of Honeycombs on the counter...we've never had those in our house!), and yummy!
The other night when we were at Grandma and Grandpa's, Kate was the centre of attention. She walked around like there was no tomorrow and charmed the pants off of all her relatives. While she was busy walking and playing, I modelled conversation through Kate's PODD and chatted with the adults about my new-found understanding of assigning meaning to all of Kate's efforts of communication. Kate was busy playing with a train with her back to me, so I acknowledged that I was talking about her progress and our efforts. To make sure that Kate knew I wasn't talking about her without including her, I engaged her in the conversation. I didn't expect Kate to acknowledge me, but she did. She looked at me over her shoulder and smiled at me...a smile that said she knew what I was talking about. I'll never forget that look.
And to top it all off, after a fantastic session with Christine our physiotherapist last Friday, I received this awesome email:
I just wanted to let you know how moved I felt today watching you use the communication book with Kate. It makes so much sense to me that she is absorbing the words and pictures and meaning without always looking at the pages. I really think your hard work will pay off and I feel very excited for her that you are giving her this opportunity. It is beautiful to me how much faith you and Jeremy have in her ability. She amazes me ..... and her walking today.... is just beautiful:)
Enjoy your March break.
Sometimes, life is pure AWESOMENESS.
Communication leads to community, that is, to understanding, intimacy and mutual valuing. ~Rollo May
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!
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.