Chiachiarone (kee-ach-ya-rone) = Sicilian for chatterbox

Lily has had a major breakthrough with her Tobii in the past few weeks. She’s communicating through it – telling us what she likes, wants, needs. And I can’t begin to explain how much it means to get a glimpse into this sweet, silly, smart girl’s mind.

Today she told me (after we got home from a birthday party):

  • We made a ‘card’ (for Stella, the birthday girl)
  • We gave a ‘present’ to Stella
  • We got a ‘present’ too (2 necklaces and a magic wand) and it made her ‘happy’
  • She said she wanted to ‘rest’ ‘tonight’ (after I asked if she wanted to go to the other birthday party)
  • She also told me she wanted ‘Grandma’ and Marina (her ‘cousin/sister’ – she now uses these two pictures interchangeably) to ‘take’ her to ‘school’

These things likely seem inane for a parent of a neuro-typical child. But to me, it’s magic. Being able to have a conversation with my supposedly nonverbal, potentially cognitively impaired child (according to typical Rett literature) is amazing.

Speaking of nonverbal… Lily has gotten really good at using the word ‘no’. As in, ‘give Grandma a kiss!’, asks Grandma.  And then Lily gives an emphatic ‘No!’ Also she dropped the f-bomb yesterday. I must clean up my potty mouth ASAP.

 Here Lily, wearing her fancy new necklaces,  is asking to watch a 'TV show' 'Elmo'. So Elmo it is!

Here Lily, wearing her fancy new necklaces, is asking to watch a ‘TV show’ ‘Elmo’. So Elmo it is!


7 thoughts on “Chiachiarone (kee-ach-ya-rone) = Sicilian for chatterbox

  1. Yeah ms lily. You go girl. We r soooooi proud of you and miss you very much. See you soon. Love and hugs Aunt Jeannine

  2. Every time I look into those gorgeous connecting eyes there is no doubt it’s all in there and just needs a way to get out! What a fantastic breakthrough!!! Everyone’s strength and fortitude is paying off. Congrats on the amazing progress. xoxoxoxoox

  3. Pingback: The importance of genetic testing and Rett Syndrome… | blueberriesandgiggles

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