Monthly Archives: June 2015

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

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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!

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Water Lily

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Lily and I just got back from Cape Cod with Grandma and Marina (my 10 year old niece). We were so lucky to have them! They flew up from Florida to be with us.

While there, L was in her element. Running along the shoreline, relaxing on the sand, navigating us through the busy high street in Provincetown and just enjoying time with her family.

But she misses Grandma and Marina terribly. On her Tobii – every night since they’ve left – Lily keeps saying that she wants to talk to her sister. (Sister is a picture of a girl so she means Marina). Those two are soul sisters for sure.

Lily and I had such an amazing trip with such amazing ladies!!! We made a lifetimes worth of memories and I took way too many photos, as usual.

Lovely ladies

Grandma and her girls

Book time!

Book time/cuddle time

Showing Grandma how to use the Tobii

Showing Grandma how to use the Tobii

Pulling Marina through P-Town

Pulling Marina through P-Town

Inchstones, not milestones

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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

 

 

 

What a week!

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Here are a few low/highlights:

  • Part of the ceiling collapsed in my living room
  • Lily’s bus ride home on Tuesday was 2.5 hours long (this is not the first time this has happened)
  • The guy from the Office of Public Transportation is verbally harassing me (in a flirty, filthy, patriarchal way) as I try to get to the bottom of the bus delays
  • My car was towed this morning 😦

BUT…

  • Lily had an awesome week and continues to amaze me and her therapists with her abilities
  • She is loving her blue flowers
  • And the biggest highlight of all was that we got a visit from Taffy! (Psst: I may be getting a therapy dog for L and wanted to see how she would do in the presence of one…. The results speak for themselves!)
Enjoying the blue flowers on the patio

Enjoying the blue flowers on our patio

Playing with Taffy!

Playing with Taffy!