Lila Update 5/14/15

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I’ll start this update with the obvious – we had our first IEP meeting with the school system. Lila starts the developmentally delayed pre-K program this Fall, and we honestly seem to have lucked out with the school district we are in. We got all of her IEP goals set, and she will receive occupational therapy and speech therapy through school as well. We’re so excited, and we all believe Lila will thrive in their pre-K program, especially in conjunction with everything we already have going on with her here at home.

Our Top Challenges right now (aside from communication of course) are as follows:

  • Doorways: This has become a really big issue – if she sees someone go through the front or back door, or sometimes even a doorway in the house she becomes extremely upset.
  • Water Noises: The dish washer, the kitchen sink, etc. – all cause her distress as of late.
  • Cats: She really dislikes them (probably because they’re so unpredictable).
  • Food: She gave up some foods, which is a huge deal because she didn’t eat much to begin with. We’ve started putting out new foods to visit every day so she can get used to them – this week it’s been peanut butter sandwich bites and veggie straws.

Random Cute Events from Throughout the Past Week or So:

  • One evening this past week, Lila took it upon herself to take off her wet diaper and bring it to me so I would get her a new one – cracked me up!
  • She has started insisting that along with piggy back rides, an absolutely essential part of our evening is where she climbs into a recliner while I blow bubbles over her – for a ridiculously long time perhaps, but it makes her so dang happy! (see picture above)
  • She has started trying to sing along with me when I sing her the “Bee & Slug” episode from Wonder Pets.
  • She has started faking sneezes so I will look at her, smile really big, and say “Bless You!”
  • She sat at the kitchen table at daycare with a couple of other girls (first time ever), and she even picked up a pencil.
  • She started saying a new word (video on our Facebook page): “Whoa!”

Happy Mother’s Day

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Thank you to Lila today on Mother’s Day (and every other day) – I’m so grateful to be her Mommy.

There will be no “I love you”‘s, no hugs, kisses, or little handprint/footprint cards here today.

She has taught me what true love is, that love needs no words, and she has made me a much better person in so many ways. She has been and will continue to be my greatest teacher ❤️

5 Positive Things about Autism

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 1.) It Shows You Who Your True Friends and Family are:

Nothing will show you someone’s true colors faster than having a special needs child. We’ve lost friends (and even some family), but the ones who are still here are the best of the best. We’ve decided that our family includes anyone we deem family!

2.) I’m a Better Person with a Stronger Marriage:

I have a lot more understanding, compassion, and love for all who are different. Lila has opened my eyes to so much, and I’m forever grateful. Bill and I are even stronger now than before we had Lila. He’s the most amazing husband to me and Daddy to Lila. We’re a team, we’re the only ones who truly “get it”, and there’s no one I’d rather have in my corner than Bill.

 3.) Lila’s Self Esteem is Rock Solid:

Lila is always 100% her true authentic self – she isn’t swayed by public opinion, gender stereotypes, or is influenced by corporate advertising. If she shows you affection, it’s a big deal. She never acts any specific way just to try and please someone. She is who she is – and that is such a beautiful way of being. I have and will continue to learn so much from her.

 4.) Autism Teaches You To Live in the Moment:

Her future is unclear – will she talk? Be able to be potty-trained? Be able to live independently? Who knows – and honestly, that’s all way too much to take in – so we worry about things one day at a time. It’s been a whole new way of living, and I’m a much happier person for it.

 5.) Increased Appreciation:

We’re grateful…. for every single thing. Those moments where we’re totally connected – eye contact, giggling, and smiling = priceless. We have no idea what her future holds, so there are no “givens”. Therefore each and every tiny step forward is met with both celebration and gratitude.

Why I Love when Lila Brings Me Things

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Lila has started bringing me things: Bill’s hat, my sunglasses, my purse, she even brought me a couple of fudge graham snacks the other day and pushed my hand up to my mouth so I would eat them.

I recently had a parent of neuro-typical children ask why this behavior affects me so much, and that’s actually a really great question.

Lila bringing the purse/sunglasses/hat, etc. to me is affection in my eyes. The items she is bringing to me are mine (and sometimes Bill’s!), and she wants me to have whatever it is – and it absolutely feels like love. She smiles when I put it on, and the connection right at that moment is intoxicating. I thank her and put on the purse/hat/sunglasses, etc. It just blows me away, I’m so unbelievably grateful.

She doesn’t show affection in the traditional ways – we don’t get hugs or kisses, she doesn’t always smile if we just smile randomly at her, and she’s considered non-verbal. She has a completely different neurology, her own unique way of doing things, and an incredible knack for getting her point across in any way possible!

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 😉

Time Out

My life is filled with work, therapy appointments, researching autism and sensory processing disorder, housework, working on multiple therapy techniques with Lila, and trying not to constantly worry about whether or not our little girl will ever (fill in the blank).

I give it 150% every single day, because there is absolutely nothing that is more important. I ended up taking a few hours off yesterday and today in order to hang out with Bill and a few of our best friends.

It was a great reminder that in order to take care of Lila, Bill, the house, and everything else to the best of my ability – I need to take some time out for myself every now and then.

It was much needed and so incredibly appreciated. Thank you to my wonderful husband for helping facilitate everything.

All of you: please make sure to take some time for yourself – even if it’s just a little here and there. I believe that as special needs parents, it’s absolutely imperative that we take a small break every now and then!

Always Moving Forward

Last night I ended up with two outlines on my phone for an upcoming blog…

On one hand I was rejoicing in some of Lila’s latest developments, because no matter how small it may appear to others -we celebrate every single new occurrence in our house. Progress is progress!

On the other hand….It had been a long weekend, and I was feeling both exhausted and overwhelmed (I think we all have our days, even when we always try to stay positive). I started thinking about those things I try NOT to let creep into my mind…. “Will she ever be able to live independently?, “What if something happens to Bill or me?,” “Will she ever be able to talk, or be potty-trained? “, “Should we have another child just so there’s someone to look after her when we’re gone?”, those kind of thoughts. Yes, that last one has crossed my mind, and yes – I know that’s terrible.

In a rare moment of actually sitting down, I had to decide – about the blogs yes, but more importantly about how the rest of our evening was going to go, how the rest of our LIFE will go. I thought of this quote from Autism Hippie:

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It’s true you know. So I put my big girl panties on and Lila and I had a wonderful rest of the evening. The funny thing is, she’s incredibly intuitive – I knew she knew I was “off”, and she did a couple of things that made my night:

She brought me some of her hair twisties (one of her favorite fidget toys), and she placed them on my head and giggled. No clue why she did it, but it sure made me feel special and loved.

A couple of times, she actually brought me her monkey blanket! She just smiled, and handed it to me. I loved on it and told her thank you so much…. Then did a “ready, set, go” and threw it at her face (because that’s a favorite game between her and Daddy). I wasn’t sure what she wanted!

Then she smiled and gently handed it to me again. I honestly think she was giving me her blanket to help me feel better, and that makes me incredibly emotional.

I definitely hope to hear her little voice say “I love you” someday – but I swear, she says it loud and clear without any words at all, and in such unique and meaningful ways.

So… I will finish up that positive update piece on Lila and will get it out this week. Thank you Autism Hippie, that quote was exactly what I needed last night; and as always, thank you Lila. You have been (and will continue to be) my greatest teacher.

Lila Update 4/6/15: “Excuse Me?”

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Picture above is of Lila saying “a clue!” from Blue’s Clues. I tweeted that video to THE Steve Burns (the one who played Steve on Blue’s Clues) last week – he “favorited” it and re-tweeted it – how cool is that?

Lila has started to try and verbalize more things as of late, although I’m not sure if things are just now starting to happen or if they’re just now becoming clear enough for us to finally understand.

Regardless, I had noticed recently that Lila said “ga-ga” in the same intonation I use when I say “bubbles” (in a very sing-song type way) – and this would happen while we were playing with bubbles.

So every time we play with bubbles now, I say “ga-ga” (her version) followed by “bubbles” (our version). Yesterday she asked for bubbles, not with the PECS card or by going to get the bubbles and bring them to me, but by saying “ga-ga”. I mean….what? It kind of shocked me… I may have broken a land-speed record making my way to get those bubbles for her!

She has consistently been saying “go”, “yay”, and “yeah” quite frequently and in context for the past few months as well, and that has been incredible.

Then last night, we had a moment that hit me like an electric shock…. she handed me the iPad, was ushering me into the living room per usual, and said “mama go-go”.

I’m still sort of in shock. She has never obviously called ME “mama”, she just says “mamama” sometimes. I have NO clue if it will happen again but oh my word was it AMAZING!

Lila Update 3/31/15

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The Little Lady actually LOVES to be outside now!

I’m still in shock. We went from meltdowns and grabbing onto us for dear life mere weeks ago to yesterday – she took her “Go Outside” PECS card off the back door and brought it to us so she could go outside. The simple act of being outside with our daughter is probably a simple, mundane act for most families, but it’s been amazing for us. I’m so grateful, and so happy for Lila that she enjoys being outside, enjoys swinging, enjoys walking around and picking up sticks – it’s all just absolutely incredible.

If you had told me a year ago that she would be willingly playing outside while wearing shoes and her glasses – I honestly would have thought you were completely insane.

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As always, a HUGE “thank you” to Janet – who helped guide us through the entire process per usual. We have three and a half more months with Janet before Lila ages out of SoonerStart. We’re all so lucky to have her with us!

It’s become very clear to me that between Lila aging out of SoonerStart this summer and starting at the developmentally delayed pre-K program in the Fall, it’s inevitably going to be a year of constant change. I don’t do change well. It’s taking everything I have to try and keep up, and to try and let go at the same time.

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This week we’re working on patience and transitions – using patterns with both countdowns and a “first-then” approach. The countdown now has a visual support that we’re using as well – I really think it helps, especially in times of high anxiety as in switching from one preferred activity to another. For example: “First we play with “snow”, then we play with bubbles – five more!” and so on and so forth.  She’s doing very well so far – as she has with most everything lately.

We have also expanded her PECS cards considerably – a couple of issues here: trying to transition her from the pictures we take ourselves to more cartoon-type pictures made with Board Maker  – that will be more in line with what her pre-K will be using.

I’ve also noticed she’s been having trouble initiating at times – actually going over to the white board, specifically to get food/drink cards. To help with that, I have been taking a few preferred item cards off the magnetic whiteboard and instead placing them on the coffee table – this makes it a tad easier for her to initiate, and once she’s done that once I can place it back on the whiteboard and she typically doesn’t have any more problems asking for more after that.

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You all probably saw the video on our Facebook page of Lila saying “A clue!” from Blue’s Clues. That thrilled me like nothing else in a very long time. Eye contact, interaction, verbal imitation – all of that while having fun as well. Having fun while we’re working on something has always been key for Lila.

Within the past couple of days – what has happened with prior words like saying her name, saying “Dora”, etc. – has happened again. Now that she’s consciously trying to say it, it won’t come out right. We think that perhaps an apraxia diagnosis is in her future, and would explain this particular phenomenon.

I will end on a happy note: the other night she started making an odd new noise “nyah, nyah, nyah”. I started mimicking her. There is nothing like those moments: she turned quickly to look at me in the eyes, smiled SO big – and giggled. Then she made the noise again and waited for me to do the same. Back and forth for maybe 15 minutes – it was awesome.

I will update again soon, you never know what Lila’s going to do next…. GO, Lila, GO!

A Lesson in Love, Acceptance, and Pure Joy

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LOOK at the pure, unadulterated JOY in this little girl!

I can’t even… It’s truly one of the most genuinely beautiful things I have ever seen – sheer perfection. That’s one of my favorite things about her -she’s always so unapologetically and unabashedly….. Lila.

It’s taken her to teach me that it truly doesn’t matter what others think – like, at all.

If we had listened to everyone else, Lila wouldn’t have been diagnosed so early and wouldn’t have received the early intervention that she desperately needed.

She also spins, flaps, and has a myriad of behaviors that society doesn’t deem “normal”. We’re not going to teach her “quiet hands” or try and get her to change who she is. We want to teach her to successfully function in society and live independently if at all possible, but that doesn’t include forcing her to try and “pass” as neurotypical…because she’s not…she’s autistic (and perfectly so).

She has been and always will be more than “good enough” – I want to make sure she internalizes that and takes it with her always. If how she acts makes others uncomfortable – that’s on them to work through, not her. The number of autistic children only continues to grow; society will have to change and be more accepting of them – and I will do everything within my power to make that happen for her.