Lila Update 4/30/15

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With as fast as Lila is growing and changing these days, I definitely need to do these updates more often!

Last Friday at therapy, Lila chose what activity she wanted to do (rings vs. puzzle) using an AAC app on the iPad instead of her usual PECS cards. It actually made me emotional to hear a voice (even if it was on the iPad) say what she wanted. She was SO attentive for so long during that session – trying to help Janet take the rings on and off, and imitating the cadence of counting while trying to say the numbers herself. It was incredible.

We went to the Festival of the Arts twice this weekend (which was quite a feat in and of itself, parking was difficult and it was unbelievably crowded. We went on Saturday to see Janet’s incredibly talented son (Ian’s) photography, and the second day because I had a dance performance.

There is one moment from the first day I can’t get out of my mind… at one point she started to meltdown – Daddy carried her over by a big, beautiful sculpture. The visual of the other children playing in the playground juxtaposed against the visual of Bill holding Lila while she was screaming, crying, and had her hands over her ears…. that broke my heart. Just another reminder of why we all work so hard every single day.

However, it was overwhelmingly positive as a whole – she sat in her stroller with her iPad, watched some Blue’s Clues – and on Sunday Bill was able to find a quiet spot on the back side of the stage that worked perfectly (and I had a blast on-stage, definitely a “win” for all involved).

Earlier this week, Bill was sitting at the kitchen table and could hear Lila rocking on the recliner (hard enough to tip it over backwards), so he said “Lila – no, no, no!”… she stopped, looked in his general direction, and said “yeah, yeah, yeah!”. We both had to laugh – being able to interact with her that way is kind of incredible for us.

Yesterday Lila brought her Daddy the TV remote, took out her paci, and said “a clue!”, “a clue!”. She asked for Blue’s Clues VERBALLY! Whaaat?!? *happy dance* Absolutely incredible…. she never ceases to amaze me.

She has also started a funny new thing lately where she starts chattering at you in very specific tones if you’re doing something she deems unacceptable (ie leaving the living room and going into another room). She sounds like an angry little squirrel – no actual words but she definitely gets her point across!

Upcoming events: GI appointment this week, Autism Oklahoma PieceWalk this weekend, and my dance rehearsal/recital is next week as well (busy, busy!).

We have our IEP Meeting scheduled for May 12th – they will review Lila’s eligibility, assign her a category (Developmental Delay/Autism), and develop her IEP for her first year of pre-K.

Bill, Janet, and I will be there – I’ve already been warned to let her developmental evaluation go in one ear and out the other – we are just focusing on all of the positives instead: how far she has come and how much this will benefit her! There is a lot of change going on all-around this year – we’re all just trying our best to hang on and enjoy the ride 😉

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