Lila Update 3-6-15


Lila has had a great month, she never ceases to amaze me. I’m honestly in awe of her tenacity and strength – she’s definitely a force to be reckoned with – and that’s a trait I believe will be key to her continued success.

One of my new favorite things (that doesn’t necessarily fit into a category below) is that she loves to bring me her Daddy’s hat. She thinks it’s hilarious when I put on Daddy’s hat 🙂 So many fun little games that SHE creates – as always, she’s setting the pace and leading the way! Here are a few updates on specific things we’ve been working on:

  • PECS: The magnetic PECS board is still working really well, I’m so glad we were able to transition to that instead of having the cards on the coffee table. When I look back a year ago and realize she wasn’t using ANY cards, I’m just so grateful that we are where we are (even if we still have a long way to go!).
  • Bath Time: Bath time is still extremely dicey, it’s a lot of the exact same very strict routine – with a lot of planning and preparation just to get her in the bath tub and washed in 60 seconds (without her having a meltdown). However, I’ll take it. Anytime we try to push her forward in this area she regresses and I have to start all over. I hope that in the future she will get back to enjoying bath time, she used to spend over an hour in there!
  • TV in Conjunction with Therapy: I continue to stand by our decision to USE Lila’s love of TV shows to help aid in her therapy. Her echolalia usually seems to stem from her favorite shows – and she LOVES when we get up and actually act out what’s going on – sing, dance, the whole nine yards! There are very specific parts in each episode where I’m required to participate – she will find me wherever I am in the house and quickly usher me into the living room… “You’re ON, Mommy!” haha I love it. The current favorite is by far “The Wonder Pets”.
  • Sensory Issues: She despises loud noises – vacuums, hair dryers, the water running in the sink, etc. She’s been seeking a ton of proprioceptive and vestibular input – we’re working with Janet to come up with more ways to meet those needs (aside from the 50 piggy-back rides I give of an evening!) – joint compressions, some “heavy work” with a shopping cart, bouncing on therapy balls, smooshing her with pillows, etc. Lots of bouncing, flipping, flapping, and spinning going on at our house!
  • Speech: Lila makes a ton of different sounds when she babbles (which is almost constantly nowadays); and she can sometimes imitate a sound at the right moment (ie the video of her trying to say “Dora!” after it’s said on TV). She can also say “go”, “yay”, and “yeah” – all in various situations – which is awesome! Lately she’s been trying really hard to actually speak when she wants something – something that I cannot guess, something we do not have a PECS card for. In those situations she is desperate to get her point across – she very purposefully plants her feet flat on the floor, looks right at me, opens her mouth…..and all that comes out is (in a very low and loud tone) “Ahhhhh”… then the stomping follows, the screaming, and then the pushing. I can feel her frustration, her anger. It’s palpable – and it guts me – every single time.

We’re going to start work with some ALI (Aided Language Input) in regard to colors today, and possibly move on to core boards depending on her reaction. We’re so blessed to have Janet to tell us what to try – and if that doesn’t work – what to try next.

Will update again next month – here’s hoping for another month full of progress. Go, Lila, Go!


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