Birthdays…. I see lots of parents on Facebook who comment that they can’t believe how fast the time has gone by, or that they wish time would stand still forever, or say that they have baby fever now that their child is getting older. I don’t feel any of that… when I see typical babies now, there is a sort of stillness and calm about them in general that Lila never possessed. The way I see those babies act (and react) was just not our experience at all, it’s so completely foreign to me.

Lila turns 3 this Friday and honestly…. I couldn’t be happier about it. I don’t feel like time has flown by at all, and I certainly don’t miss Lila being an infant. You know who else doesn’t miss it?..…Lila! She was born autistic – thrown immediately into a world that just seemed to assault her senses from every angle. She would scream for hours upon hours – we couldn’t fix the GI pain and it gutted me. She was miserable and truthfully, it wasn’t a good time for any of us.

Her first couple of years were spent searching for answers: going to pediatric gastroenterologists, dermatologists, ear-nose-throat specialists, neurologists, having a sleep-deprivation EEG, getting ear tubes placed, and having multiple GI tests done (dysphagiagram, upper GI, multiple X-rays, and an endoscopy).

Thanks in small part to time in general, and in large part to all of us carrying out the therapy techniques we learned from Janet (our Early Intervention SoonerStart therapist) Lila has gone from screaming, not making eye contact, and not being able to communicate at all – to now using a board full of picture cards or an AAC app to communicate. She seeks out our attention – she WANTS to play with Mommy & Daddy! She creates her own games with us, and really tries to show us how to best interact with her and help her.

The older she gets, the better she can communicate – and the better it gets for ALL of us. I am just so excited to continue to watch her grow and thrive – we made it to THREE! *high five* I can’t wait to see what the future has in store for us – just keep on going, baby – GO, Lila, GO!

Lila watches quite a bit of TV. I know there are those who would judge us for that – but I’m going to tell you WHY we allow it. It’s certainly not to get “free” time for ourselves, because we have to be very-much involved in TV time.

Back in 2014, I read “Life, Animated” by Ron Suskind. In the book, he chronicles the journey of their son – Owen, who loved to watch Disney films over and over. Owen learned to communicate, read, and navigate social situations not in spite of the movies… but because of them.

When autistic children watch TV, they’re more likely to mimic what they’re seeing and hearing (then when they’re interacting with actual people). There’s no social pressure on them to do so, and that helps them relax.  Lila has a “TV Time” card which is on the visual schedule every evening.

SO…. every evening we spend hours dancing around together, singing, and scripting the shows that she loves most – and let me tell you… the intense JOY she shows from watching her two world collide is more than enough proof for me that it’s the right thing to do. The pictures I post of Lila looking ecstatic – that’s almost always what they’re from. In addition, the few words she’s able to say almost have always initially come from watching these shows.

She gravitates towards TV shows that have strong learning components, and those are the ones she watches: they help her learn colors, shapes, counting, words, etc. They help her learn to navigating social situations – a lot of the learning comes via music – which Lila has connected to since very early on.

We take whatever she’s into – whether it be TV, hair twisties, balloons, iPad – and USE that for therapy purposes. We’ve seen tremendous progress with this approach. She’s learning and growing – and having FUN in the process! I’ve had to let go of a lot of my pre-conceived notions in regard to parenting – Lila has (and undoubtedly will continue) to show us the best ways to help her learn and grow.

So many new things all the time…. here we go:

Obviously I was home with the family over the 3-day weekend. The past couple of days (Monday and Tuesday), Lila has started to get really upset when she wakes up and I’m not there. Daddy has her in the morning until he takes her to daycare, and I go to work. He sent this text to me this morning after he got her up for the day:

“I can distract her then she walks around the corner and realizes you aren’t in the bedroom and starts crying and saying momma”. That breaks my heart but it’s a good thing, and it’s progress! She’s so much more aware in all aspects nowadays – which is great… but it brings with it a whole new set of challenges.

We are now working on procuring some daily pocket schedules – one for the house and one for daycare. That way everything is lined out, and she can see that she is with Daddy, then she goes to see Sage, then Mommy will pick her up. Fingers crossed that it helps alleviate some anxiety, and Janet even commented that this issue may be at least partially behind some of her night-waking (anxiety about what is going to happen in the morning).

This week she has started playing with TWO new things: D-ring keychains and small rubbery bugs/animals. As her Daddy pointed out, this is a huge deal considering what a creature of habit she is! Plus those little rubbery things are pretty intense sensory-wise. So proud of her!

Some other recent developments:

• We learned to not go in the bathroom when she’s in there playing – she’s decompressing and needs her space.
• She has been picking up a stuffed ball (stuffed! She never touches stuffed animals), and she’s been checking out her plastic Gabba figurines as well.
• She’s been crawling up into the chair at the kitchen table and sitting in it!
• …. then she swiftly moved to climbing ON the table – but I somehow managed to alleviate the situation by letting her play with the river rocks that were on the table like she wanted…. only IF she sat down in the chair. It working for the moment 😉
• This weekend I was getting her some yogurt melts because she brought me the card for them, and I accidentally dropped one on the floor. Without a second thought she picked it up and put it IN the bowl on the counter. Whaaat?? I know that’s a seemingly small thing but it stood out to me as pretty freaking awesome.

I definitely take a lot of pictures, but the BEST things always happen when I can’t take reach my camera. She has started sitting on my lap so we can play games on the iPad together. I cannot even begin to describe how much I love this new development. It’s the only time I can somewhat snuggle her!

We started doing what I’m calling “squeezes” this weekend. A little bit of deep pressure and she loves it!!! (These may also be known as “hugs” *Squee!!!… Shhhh!*).

Our last official SoonerStart meeting with Janet is this Friday. I can’t even. Lila starts school on August 20^th. It’s all coming up so fast!

Current Top Challenges:

• Transition from Weekend to Weekdays
• Minor Behavioral Issues
• Wanting Piggy-Back Rides Constantly (she REALLY craves proprioceptive and vestibular input, and apparently this provides both!)
• She Really Dislikes the Pets
• Regression in Regard to Outside Continues (she currently wants nothing to do with it)

Currently Focusing On:

• Amping Up Visual Schedules
• Continuing to Work With AAC
• Increasing Amount of Training Trips (to stores, restaurants, etc.)
• Starting to Teach Turn-Taking & Waiting

Lila was up at 2am, 3:15am, and 5am. Possible reoccurrence of more pronounced GI issues? I never thought we’d still be dealing with this at almost 3 years old.Just when you think you have things somewhat figured out, you don’t.

Back to detective mode – is it something new that she ate? Something we inadvertently changed and didn’t realize? Is it actually GI pain, or is it something else? Could it be nightmares? Is it possible that one of her GI medicines needs to be titrated up or down? Why is she having more frequent meltdowns at daycare all of a sudden? Is it all related?

How do I know? How can we figure it out? What if the answer to all of this IS (as multiple pediatric gastroenterologists purport) = Autism.

There is honestly nothing worse than your child being in pain and not being able to figure out exactly what it is or why it’s happening. I can deal with autism affecting her ability to communicate; I can deal with it affecting her executive functioning skills, her sensory issues, and her dynamic thinking. I can deal with it causing her to be rigid and inflexible in her thinking.

What I CAN’T deal with is it causing her physical pain.

I’ve been asked that question a few times now: “How do you manage to stay so positive?.”  I don’t know if they just mean because Lila is autistic, or that she (for the time being, anyway) is severely affected and non-verbal.  First of all, I’m NOT positive sunshine and rainbows ALL the time. That’s impossible. I’m human, and I definitely have my moments.

I’m blessed that I have a wonderfully loving and supportive husband (Bill) who loves this Little Lady as much as I do and is always there for me in those difficult times – he always knows just what to say. I also have Janet, who is always there to listen and to help me formulate a plan of action.

In general, here are a few tips I’ve found for staying positive:

Short-Term Thinking:

I take things one day at a time. Every day, every minute of every hour – happiness is a choice. I may not be able to handle thinking about the next week, month, or year. But I can handle today, and if that’s too much for you on any given day – trust me, I know those days – take it hour by hour.

Being Mired Down in Negativity Doesn’t Benefit Anyone – Especially Your Child:

If I sat around and worried about Lila, her future, and our future constantly, I would be an absolute basket-case. I AM a worrier by nature, and a planner as well. She’s incredibly intuitive and picks up on the feelings of others, whether that be negativity, stress, or genuine happiness and love.  Lila has taught me so much – including how to “let go” of things I cannot control.

I Know She Will NEVER Stop Growing and Changing:

There is always something else to try for any given issue when the first thing (or the second or the third) has not helped. We’re just constantly trying to problem-solve for her and help her be OK every single day. Things are constantly in flux for her, so what is so this week is most definitely not guaranteed to be true the next. She does things in her own time. No one knows what her potential is except her, and my husband and I are just here to help her reach HER best potential (whatever that may be). More than anything we just want her to be healthy, happy, and to always know that she is more than good enough just by being herself.

LOOK at Her!!!:

Pure, unadulterated JOY. I can’t even… It’s truly one of the most genuinely beautiful things I have ever seen in my entire life – sheer perfection. That’s one of my favorite things about her -she’s always so unapologetically and unabashedly….. Lila. Whenever I start thinking how difficult things are for us as her parents, I instantly shift my focus to how much MORE difficult this is for her. If she can find such beauty and joy in every day despite her struggles, who am I to disagree? It’s taken her to teach me that it truly doesn’t matter what others think – at all. Spin, flap, be as different and as “you” as you want to be. Life is short -always strive to find the beauty, happiness, and love that is around you.

Bill called me this morning after dropping Lila off at daycare. He usually brings the iPad to help Lila with the transition from home to daycare, and today was no exception. When they got there and he put her down, she wanted to play “Toca Kitchen”.  The other little girls started crowding around her. Bill asked them if they usually just watch, or if they ever help her. One of the little girls (Mia) said they just watch.

Bill told them that Lila may ask them to help, and if she does that they should try and help her. Just then she was cooking something on the game – she doesn’t like to press the back arrow, for whatever reason it gives her a lot of anxiety and she uses Bill or I to press it for her. She grabbed Mia’s hand and put it over the arrow so Mia would press it. Mia was pretty excited that Lila had asked her to help (and she did)! Just the fact that she had that interaction with another child made my day – very exciting!

Janet had me contact Lila’s school and ask who their augmentative communication specialist is – working with them to see what direction they would like us to go in: Dynavox, Proloquo, or GoTalk Now (which is what we’re currently using) . We will see what happens, I would love to be able to send Lila to school with her iPad or an AAC device of some kind!

We started using a Core Board on GoTalk Now last Friday at our SoonerStart session with Janet – so we’ve been working on that this week. We also added some new episode choices for her (Wonder Pets). She has been coming over to my phone and wanting to watch videos of herself this week. She LOVES watching herself – I may try to figure out how to turn that into a picture card!

She is all about anything and everything that has to do with me performing alongside her favorite shows while we are watching them… I KNEW all of that dancing/performing would come in handy! I perform “The Wonder Pets: Bee & Slug”, multiple songs from “Frozen”, and chase Umi-dollars with Lila on my back while watching “Team Umizoomi” every single evening. We have never forced Lila to make eye contact, and because she trusts us and enjoys the interactions, she does it freely and willingly. Makes my heart so happy!

She turns 3 in three weeks, can’t wait to see what she does next – we’re just doing the best we can to keep up!

We have 3 therapy sessions left with Janet (including today). It’s unbelievable how far we’ve all come in the past 20 months.

Yesterday after work, Lila brought me cards (or used the iPad) to tell me when she was hungry, when she was thirsty – and what exactly she wanted. We followed our visual schedule throughout the evening, and she showed me which episode of what show she wanted to watch during TV time. She brought me the “Bubbles” card when she wanted to play with bubbles.

During iPad time, she chose what she wanted to play. I pulled her up into my lap to play AlphaTots, and at one point she got down to go get a snack off of the coffee table. When she was done, she ran back over to me in the recliner, looked me in the eyes, and lifted her arms up – she wanted me to pick her up and put her back in my lap. I about cried.

We listened to the alphabet song at the end of the game a few times, and it’s one of her very favorite parts. At one point during the song, I touched my head to hers and she leaned into me while she hummed along. I just closed my eyes and marveled at what was going on. For parents of typical children, I know this sort of thing is taken for granted, just a typical evening. But Lila isn’t typical – and neither are we.

When we started this journey, Lila was 15 months old. She would barely acknowledge Bill and me at all, and there were times I thought we had lost her. Our first month with SoonerStart was spent literally just following Lila around, doing exactly what she was doing (touching the flower design on the front door, opening cabinet doors, touching the metal circles on the side of the couch). Barely any eye contact at that point, we had to immerse ourselves into her little world – and we did, whole-heartedly.

We are now doing things I never even dreamed of back then – she follows us around wanting to play and interact. She can say “yeah, yay, and go”, and can bring us picture cards for a multitude of items/actions. I can’t even express my gratitude for SoonerStart – and Janet in particular. She has been in the trenches with us every single day since that first session. She has not only been Lila’s primary therapist and SLP, she’s been our therapist – helping all 3 of us successfully navigate this new life of ours with autism.

Parenting Lila since October 2013 has in essence been a 3-person job – Janet has been integral in each and every one of our major decisions. The thought of losing her as Lila’s primary therapist…. (not to mention the Friday afternoon visits with one of my favorite people) is a tad overwhelming. How do you “thank” someone for giving you your child back? For helping you relate to her in ways you never thought possible, and for showing you the beauty in what once terrified us…autism. She is family for life – I can’t believe how far we have come – and Lila just continues to make progress. I can’t wait to see how far you can go, Little Lady!

I post a lot of happy pictures of Lila on this blog and over on our Facebook page, but please don’t think that means life is easy over here.

Lila is non-verbal and is (at the moment) considered severely affected on the autism spectrum.

I just have not (and WILL not) post pictures or video of Lila when she is upset or having a meltdown. It happens a lot over here – and to each their own – but I feel that would be disrespectful to her to do so.

She works so hard all day, every single day, just to be “okay” in this world.

The blog and Facebook page are meant to chronicle the therapy we’re doing, to chart her progress, and to try to inform and uplift other families along the way if at all possible.

Much love to all of you! ❤

All of these things are running around in my mind 24/7 but for some reason it’s hard to sit and actually write it down!

There’s a lot going on right now – only 5 therapy sessions left with Janet…. that alone could cause me to have a nervous breakdown….EXCEPT for the fact that: a.) I believe Janet will still be in our lives, and will always be there when we need her, and b.) She’s slowly been teaching me over the course of the past year and a half to “be my own Janet” so-to-speak. No one could have done a better job to educate us, enlighten us, and successfully help us navigate our new life.

Lila starts the developmentally delayed pre-K program on August 20^th. I am simultaneously a nervous wreck AND super excited for Lila and what’s to come.

Over the past few weeks she has done a ton of new things – including, but not necessarily limited to the following:

1. We’ve started using a visual schedule a.) to help ease her anxiety about what’s coming next, and b.) so she will be used to visual schedules by the time she starts pre-K (they use them in the classroom, along with PECS cards).

2. Her fine motor skills on the iPad have improved considerably – she is getting food out of the pantry and feeding the Toca Kitchen 2 girl all by herself! She is attempting a few screens by herself on AlphaTots as well… and she likes to sit in my lap while we work with that app, and that’s been AMAZING.

3. We went with some friends to a restaurant….and she did really well… for 2 whole hours!!! Whaaat?!? Absolutely incredible.

4. I was able to successfully use the “Not Right Now” card when she requested a piggy-back ride while I was eating – and we used it multiple times with no meltdowns (it doesn’t get any better than that!)

5. She is now using episode cards! When she brings me the “Team Umizoomi” card during TV time. I then present her with a board full of episode choice cards. She totally gets it and I’m so happy and relieved that she can tell me exactly what she wants. She should be her voice whenever possible (not me!).

Current Challenges:

• The back door is still a source of huge anxiety for her. We’re working slowly to try and help her work through that.

• The sound of water running in the sink or the shower, the sound of food cooking in a skillet, and the hair dryer are also dicey. We need to introduce the noise-canceling headphones in our non-existent spare time. So nervous about introducing them because (as most of you know), if the FIRST time has a negative connotation – UN-doing that will be darn near impossible and incredibly labor-intensive.

Random Notes:

• She thinks yawning is hilarious
• She fakes sneezes so we will say “Bless you!”
• The word “whoa” and “whee” came and went (for the time-being anyway).
• Still loves her hair twisties as fidget toys, but is starting to use handfuls of pacis the same way – new fidget toy? We shall see!

1.) She understands a lot of what you say, even if she doesn’t respond.

Lila is actually very intelligent. Along with being autistic, she also has sensory processing disorder – and has trouble processing everything, especially in an environment where she is over-stimulated. She will also most likely be diagnosed with apraxia, which is a brain/mouth connection issue – which is why she has trouble speaking and currently uses picture cards to communicate.

2.) She knows exactly how you feel about her, even if you don’t say a word.

She’s incredibly intuitive, and can easily pick up on the feelings and energy of others.

3.) If she pays attention to you or shows you affection, that’s a huge compliment.

She’s not seeking to please anyone, so if she does this – she truly means it. She also may show you affection in a way you’re not used to seeing (ie giving you something seemingly random like a hat or sunglasses, looking you in the eyes, smiling, etc.)

 4.) If she flaps, spins, or stims in any way – please don’t feel awkward!

It’s OK to look – “stimming” is the repetition of physical movements, sounds, or the repetitive movement of objects. It’s a way for Lila to help manage her anxiety and to help handle overwhelming sensory input.

 5.) She’s not so incredibly different from other kids.

Her brain is wired differently, she experiences things more acutely, but she is a child first and foremost.  She may respond differently than you’re used to, but don’t feel you need to talk to her or treat her any different than you would a typical child her age.