The Summer of Octopus

I’m calling it that because she starting saying “octopus” this summer – it was one of the first things she’s said where she could say it randomly and we would recognize it and respond ❤

I feel like I haven’t written anything of substance in forever. I’m always rushed from one moment to the next, never even a moment to truly relax. This Summer has been INCREDIBLE, my favorite so far. I honestly can’t believe how far Lila has come over the past year (especially the last 6 months).

She went from not being able to set foot outside, to playing outside gathering leaves/grass/flowers, jumping on the trampoline, and playing in the pool. That in and of itself is nothing short of a miracle, folks. She’s expressing herself verbally in so many more ways than she ever has previously; it’s humbling to watch. Greeting us with “Hi!”, “Hello!”, “Heeeeyyy!”, and saying “Bye!” –not just as echolalia; but actually using them in the correct context. It’s amazing. She gives us high fives! She will TRY to say almost anything at home now. She doesn’t have any anxiety about it at home around Bill and me.

Instead of intensive, clinical ABA we’ve gone the floor-time route with Lila – all sorts of floor-time/play therapies, including bits and pieces of many different models including RDI and TEACCH. Watching her continue to blossom and grow WHILE enjoying our therapeutic interactions is worth everything. She trusts us – she seeks out eye contact, wants to play, etc. She has come SO far from 15-month old Lila, who would act like we didn’t exist.

WE’VE come a very long way as well! From terrified parents of a newly diagnosed kiddo – to not only attempting  to understand her autism, but embracing it. She’s autistic, and perfectly so. If she wasn’t autistic she wouldn’t be our Lila. I’m really enjoying the time we’re in right now – because as always, things change. She starts school again in two weeks, and I can’t wait to see what’s next!

Current Positives:

  • Too Many to List
  • Her speech is continuing to get better and better, she’s definitely using her voice more than she ever has before
  • She has STOPPED needing the “First, Then” countdowns and once I start them, she will sometimes just come over, prompt me to go to “No More!”, then we just do whatever the next activity is. She’s not needing all of that time to readjust. She’s done this in the past week both with the transition to bath, and the transition to bed. Big girl!

 

Current Challenges:

  • Patience
  • Being Bossy and Throwing a Tantrum (sometimes violent) when she doesn’t get her way (I’m pretty sure that’s a typical 4-year old challenge! *high five*)
  • Public Outings still extremely difficult for the most part. Continuing to get out in public regardless.

 

Funny Story:

One of the things we’ve been working on is dinner time. She doesn’t have to sit at the table (she can if she wants) – but Mommy & Daddy have to finish eating before we can all play. “First we eat our dinner, then we can play”. She’s had a really tough time with it, but is getting better. Little Miss Smarty Pants last night: we were eating dinner, told her we were eating but could play as soon as we were finished. She comes over to me and says “diker?” (diaper). So I immediately got up to go change her. Guess who’s diaper was dry as a bone! LOL She knew that would be the one thing I would get up for – she’s an extremely smart cookie 😉

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Lila Update 6-17-16

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It’s been so crazy hectic, I feel like I haven’t updated in ages. So many things floating around in my head and for some reason it’s always so difficult to actually sit and write everything down. I’m sure I’ll miss plenty of things, but wanted to at least get SOME of what’s been going on down in writing.

PROGRESS:

So much progress… it blows my mind.

Speech:

She has started mimicking words much more often. A lot of times they’re pretty garbled, but they’re there. New words she has been trying to say (and some just saying better) include: hey, baby, dinosaur, wreck-it (ralph), hi, ready, set, go, uh-oh, oh no, go, yay, yee-haw, demi plie, and she hums/sings a lot of melodic lines where we may not be able to understand the words, but she has the melody down. It’s incredible.

Sensory Issues:

She is still going outside! And not only that, she’s been playing in a kiddie pool for the first time ever, and wearing a swim suit for the first time in a couple of years! She even gets on the trampoline while the sprinkler is nearby. We’re about a million miles away from earlier this year when she wouldn’t even let us put her down outside.

Discipline/Understanding:

The first behavioral issue we decided to tackle was moving people. Janet came over and talked us through it while Lila kept trying to move Janet and I as we were sitting on the floor. We came up with a social story, supporting visuals, etc to help her with this….. but the crazy thing is…..she didn’t need any of it. After that incident where we clearly and concisely told her: “People get to choose where they sit. You can choose where you sit, but you cannot choose where other people sit” – she hasn’t tried it since. Definitely a reminder to always presume competence!

CHALLENGES:

Behavior & Sensory:

As much progress as we have, there are always many challenges – and I will try to line some of that out here. I never post pics, video, etc of these issues because I feel it’s disrespectful to her to do so.

The biggest challenge lately has been LOTS of behavioral issues – impatience, wanting to move us and others around like chess pieces, becoming increasingly controlling of her environment at home. Examples: we’re not “allowed” to take showers, dry hair, go to the bathroom, vacuum, read a magazine, and sometimes sit in certain places. She is really not liking the cats being around, either. The great news about this – see above in Progress 🙂

She has also regressed in regard to going out in public. Public outings have now become extremely difficult again – will start again in that area and hopefully baby-step our way back to where we were.

We’ve very recently changed up Lila’s daycare as well – moved from her in-home daycare to a nanny at the house (we can’t really afford it, but it’s the very best option for her right now so we’ll find a way to make it work). She also starts ESY next week – can’t wait to see what the rest of the Summer holds!

This.

This is what it’s all about. Her happiness. All of the worrying, theorizing, researching, planning, trial and error, meltdowns, set-backs, and successes. I will never stop fighting for that smile 💖

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Random Thoughts on the Therapy we do at Home

(Floortime/RDI/TEAACH/Affinity Therapy)

I get a lot of requests from people asking about what kinds of therapy we do at home with Lila. The short story is… it’s complicated lol. We use a lot of different techniques, sort of mish-mashed together. Here is a brief run-down:

We use variations of floor-time, and we incorporate RDI, some TEACCH, and plenty of Affinity Therapy. Everything is child-led, and using these methods has built an incredible trust between her and us – it helps when we need to push her just a little bit farther out of her comfort zone. We stim with her, join in with whatever she’s doing, and nowadays we get eye contact almost constantly (because she enjoys our interactions). She learns a lot of new skills all the time, and we do our best to ensure that she’s having a great time while doing so.

We do allow the iPad as well. She loves YouTube Kids (as well as videos of herself)  – and we’ve noticed that while for periods of time she may indulge quite a bit in watching videos, that:

  • A lot of the time along with alphabet and numbers videos, she also tends to find videos to help herself work through some of her fears/anxieties: videos of other children playing at the playground, going outside, taking baths, playing with friends, etc.
  • Almost always after a period of heavy iPad use, she presents with a burst of brand new skills. I don’t know exactly why it works, but it does work for her. And that’s all I need to know.

We started EI therapy with Lila at 15 months old, and at that point she acted like Bill and I didn’t exist. I genuinely thought we had lost her. Thanks to Janet (our EI therapist with SoonerStart – now part of our family) – she helped teach us techniques we could use to build trust with Lila, ways to enter her world, and ways to help merge her world into our own. The first couple of months, we literally just followed her around the house, touching whatever she touched, making noises she made, and doing whatever she was doing (parallel to her at that point, anything closer or more invasive would trigger high anxiety).

We still use whatever she’s into at the time and incorporate that into her therapy at home: there are a million examples; here are just a few off the top of my head from both past and present:

  • Play-Doh: she loves it, so I use it for speech therapy at home (ie I very excitedly say “orange!” with orange play doh in my hand. She loves it so she tries to mimic what I said).
  • Weebles: she used to love them, so we would comment on what the weebles were doing – spinning, etc. and that’s the first place we got the word “go” from – from us commenting on her playing with her weebles: “Go weebles, go!”
  • TV/Music: we did (and still do) use whatever songs/shows she’s into to help calm her down and take her mind off of something she’s anxious about. We also always use songs for transitions as well. She connects with music and it absolutely lights her up. I sing so much more now than I ever have in my life, and I dance just about as much as I did when I used to take/teach dance as well!

First-Then Countdowns have been a life-saver in our house, and we use them for any and all transitions (First TV, then Bath – 5 more! Then 4, 3, 2, 1 more, then very excitedly NO more!). She loves it.

As far as books I would recommend (I also get that questions a lot) – I would recommend that your first purchase should be “The Autism Discussion Page on the Core Challenges of Autism: A toolbox for helping children with autism feel safe, accepted, and competent” by Bill Nason. It’s been an incredibly useful tool for us.

Following are a few definitions of a few of the therapies we tend to skew toward:

Floor-Time”

Floor-time therapy encompasses a lot of (similar) different approaches – it’s child-centered and encourages parents to follow the lead of their child, discover the child’s interest, elaborate and build on whatever the child is interested in and assist the child in his/her play rather than trying to direct the play in a particular direction.

If a child turns away from interaction to engage in a solitary activity, then the facilitator follows the child and joins him/her in that activity.

RDI (Relationship Development Intervention):

RDI®  programs teach parents how to guide their child to seek out and succeed in truly reciprocal relationships, while addressing key core issues such as motivation, communication, emotional regulation, episodic memory, rapid attention-shifting, self-awareness, appraisal, executive functioning, flexible thinking and creative problem solving.

Affinity Therapy:

From “Life, Animated” by Ron Susskind. It involves using what your child is interested in – as therapy; using those interests as a way “in”.  Here are some of the tips/techniques used:

Listen to them and learn from them, use side-by-side engagement, dancing, use of scripting dialogue away from the screen, use of fast-forward and rewind, and role-playing. Always remember that what is on the screen with them is a context as welcoming and familiar and manageable to the child as the context a neurotypical person feels in the stroll from the kitchen to the living room. They’re living in this place. Think of it like visiting their home.

TEACCH:

TEACCH developed the intervention approach called “Structured TEACCHing”, which is based on understanding the learning characteristics of individuals with autism and the use of visual supports to promote meaning and independence. TEACCH services are supported by empirical research, enriched by extensive clinical expertise, and notable for its flexible and individualized support of individuals with Autism Spectrum Disorder (ASD) and their families.

The Festival of the Arts 2016

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Last weekend we decided to attempt the Festival of the Arts here in OKC. Janet’s son Ian had some photography to show and sell (he’s incredibly talented, by the way!)

The parking situation was destined to be a nightmare, as the festival incorporates both visual and performing arts in a park downtown. We spotted a lot for $20 parking and I immediately said “take it!”, because you all know if the experience started poorly, we were liable to have a meltdown before we even made it in!

So we parked, walked a bit and found Janet and her family – and then Lila did something she’s never done in an outside public place like that…. She wanted to get out of her stroller and walk around. Walk around – outside – amid a ton of people milling about. It was incredible. Our new-found Nature Girl made a bee-line for the first greenery she saw, then took great pleasure in plucking leaves from bushes, playing with the grass, and basically attempting to destroy all landscaping areas that she came across…. and it was glorious 🙂

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She was in her element – and as long as we were hanging out by some sort of shrubbery – she was perfectly happy. At one point we were all sitting by Ian’s photography display – Lila contently sitting in a lawn chair while playing with her iPad. She got out of the chair and started to walk away. I (of course) followed closely behind. She turned around, pushed me over back to where I had been sitting, then started to walk off again. “No worries Mom, you stay here, I’ve got this!” 😉 Love it.

We hung out for a while, and then got ready to wrap it up and head home. Successful public outing!! *high fives all around* Headed back to the van, and guess what we saw? A ridiculously flat tire. Unsure of what to do – Bill got on the phone, and I loaded Lila into the van. She was livid. She kept trying to get into her car-seat, and push me into the front passenger seat. The van is supposed to GO! She was melting fast – when Bill and Janet’s husband (Kevin) appeared from out of the crowd. Two men with a plan – we took the car-seat out of the van, and then walked to where their SUV was. Put the car-seat and Lila in, we all piled in the car, then Kevin drove us home.

Those of you with autistic kiddos know that not only was that a very kind gesture, it literally saved our day. I was so grateful!

We did go back later in the day to change the tire. Ian helped change the flat tire (Life skill!), while I followed Lila around where she could play with leaves, grass, etc. Once we were done and ready to go back home, she and I got into my car, and Bill got in the van. The entire ride home was brutal…. And I know most of you reading this already know why. Three of us came together – now we were separate. She was convinced I had left Daddy at the Festival of the Arts. It’s so incredibly difficult – once her anxiety level is sky-high and the meltdown has begun, I’ve learned (thanks to Janet, Helyn, and my own experiences as well) that all I can do is remain calm. She doesn’t process anything I say at that point. So the more upset she gets, the calmer I become. I focus on myself, and that has worked really well for us.

Next Up: Heading to some sort of park or nature preserve this weekend!

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