Inchstones, not milestones

Lily’s end of year progress reports have come in – from all of her teachers and therapists at school, and then also from the after-school therapists.  I’m drowning in paperwork!  But I’m also glowing with pride.

I’m not naive to the fact that my child is still very far behind in many things, but her delays have more to do with her motor-planning and communication struggles than her cognition.

Every single teacher said that Lily is smart, motivated, determined and funny.  I couldn’t agree more!

Her home-based teachers say she has made progress in:

  • Developing her language and operational skills with the low (print) and high tech (Tobii) versions of the PODD-12 communication system (she is walking over to the Tobii independently and is using it to communicate needs and desires – everyone now knows that she loves blue flowers and so not only do I have them planted in our garden, but she is now making pictures of blue flowers at school and we are communicating about them all the time.  This morning we were watering the flowers and I talked to her about how when she asked for something, she got it!  This is HUGELY motivating!)
  • Regulating her mood and behavior during therapy sessions and has become more flexible and tolerant of new things (I’m hoping this translates to wanting to watch more than just two movies!!!)
  • Demonstrating more reciprocity in interactions, and increasingly opts into activities, either on her own or by verbal request
  • Physically, Lily is maintaining an ability to walk independently on level surfaces
  • Also – Lily has used her voice meaningfully, on occasion, to communicate.

Take THAT Rett Syndrome!

Watering her blue flowers with Mommy earlier today

Watering her blue flowers with Mommy earlier today





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