Yes or No?

“You’re the best mom I ever had!” Claire announced to me today!  “And I just love you!”

“I love you too, Claire,” I laughed,  feeling a glow inside and wondering how on earth I was lucky enough to have such wonderful kids.  Julie wiggled her feet and giggled.   “I love you, too, Julie!” I added as she grinned.

I LOVE moments like these – it makes it all so worth it!  I see such a miracle in my life when the former “dot on the ultrasound,” follows me up and down the store aisles, bouncing enthusiastically as she suggests which “back to school” clothes would look “best” on her.  Not to be outdone,  Julie started making some choices of her own this year, and is gradually becoming her “own person” – a huge accomplishment given the extent of her disabilities.

Julie enjoying the outdoors

This summer, our team managed to teach Julie how to say, “yes” or “no” through the use of “talking picture frames.”  About the size of my palm, they have a button on the top that may be pressed to play back a recorded message – we chose to record “yes” on one frame, and “no” on the other frame.  Our goal was to get Julie to nod her head for “yes” and to shake her head for “no.”  As Julie tends to push her head to the right when she doesn’t want to eat something (ie., this is yucky, I’m going to move my face away from you!), we used this movement as a trigger for her cheek to touch the “no” frame.  At the same time, we pressed the button so that she could hear the recorded “no” (courtesy of Claire!).  I am happy to report that  Julie soon learned to push her head to the right in order to say “no” in various situations.  As well as learning to say, “no” we simultaneously taught Julie how to say, “yes.”  This time, however, we pressed the “yes” frame underneath her chin while pressing the recorded “yes.”

Julie VERY quickly learned to say, “yes” and “no” with her head, and so we started to help her refine these skills.  Instead of using talking switches, we placed a hand in each location – just next to her cheek or chin but not touching until she initiated a movement of her own – and said, “yes” or “no” depending on her head movements.

So …. what does a non-verbal child choose when she is able to “talk” for the first time in thirteen years.  Here goes:  Tacos instead of Chicken Nuggets, Rootbeer (not sure if she appreciated her choice) instead of coke, five cartons of applesauce in a row (who knew she was an applesauce fiend!), choosing a GREEN waterbottle instead of a red (I would have just bought her the red), choosing to buy popcorn, and choosing to wear makeup (and grinning about it every time!).  For the first time Julie has a reliable way to say “yes” and “no” and she knows we have to listen.  Although she does not understand all the phrases we are using – her brain is still learning to interpret many words – she understands the concept that she is able to make choices (something we worked on from a young age).  She now has a say, and is appreciating the power of her vote.

Claire has been our wonderful helper this summer, and is as enthusiastic about giving Julie choices as we are.  I usually just sit back and smile, but occasionally I have to laugh.  Claire asks things like, “Do you love mommy?” and “Do you love daddy?”   However, she has recently started to ask Julie questions such as, “Do you think mommy was silly?” (Enthusiastic “yes” and grin from Julie) and “Do you think we should go to McDonald’s?” (Obviously Claire has learned the power of group decision making at a very early age!).

Claire is also very good at directing others.  Today Princess Shimmer came over to work with Julie.  She gave Julie some choices, and  Julie said, “no.”

“You just have to ask her again, then!,” Claire announced, chagrined because her choice hadn’t been favoured.  Quickly putting her hands next to Julie’s face before we could intervene, Claire repeated the choices for Julie.  Giving up, Julie nodded “yes,” and the rest is history.  Later Claire confided in me, “If she says, “no” you should ask her again – and then again!”  I cringed to see poor Julie being browbeaten into submission, but then I “got it.”  Claire wasn’t forcing Julie to do the activity.  Instead, she was honoring  Julie’s ability to make decisions and waiting for Julie to change her mind – albeit with a teensy bit of persuasion!

Despite the lack of sleep this summer (Julie has been quite ill lately), the seemingly constant housework, and ensuring that there are no potatoes growing in anyone’s ears, I can truthfully say that I’ve been happy.  Not only have my kids both matured, Julie’s ability to say, “yes” and “no” was one of the highlights of the school break and has changed the tangent of her life forever.  As we are assisting Julie to use the PODD communication system, her emerging skills have provided her with a stable foundation for communication.

Claire has also emerged as a hero these last few months.  Sweet and wonderful to start with, she has become more independent while continuing to “help” everyone she can.  She has a gift of bringing out the best in those around her, and makes Julie laugh.  You may have seen us this summer – driving by in our mini-van, the sound of a five year old singing Justin Bieber songs to make her sister smile – with the windows rolled down so she can reach as wide an audience as possible!

Summer Fun