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!

Lila is our one and only – and from what I can tell so far – here are just a few of the differences between us and parents of non-special needs children:

1.) The Routine

For the love of sweet baby Jesus, don’t change the routine. It’s a lot like the movie “Groundhog Day” at our house, except the routine doesn’t always work…yet we cling to it like a lifeboat in the middle of a storm. Those with autism have a huge problem deciphering what will come next – having a set routine helps them create stability, and allows them to feel safe.

 2.) Food/Eating

I can count the number of foods our daughter will eat on one hand. When she DOES try a new food, even if it’s super unhealthy (like a donut, or cookie) – we’re thrilled! She is not just a “picky eater”, she is a “problem feeder” – meaning she has an extremely restricted number of foods that she will actually eat on a regular basis, she cries and falls apart when presented with a new food, and will refuse entire categories of food based on texture.

 3.) Sleep (or Lack Thereof)

We didn’t sleep through the night for over two years. She was up at least 2-3 hours overnight – every night. The lack of sleep was crippling, and I have no idea how we continued to function. Some children with ASD use melatonin since they’re bodies don’t produce it – that didn’t work for our daughter, but we DID eventually find something that worked best for her.

4.) Public Outings

Everyday outings can be overwhelming for those with autism – the lights, sounds, the typical hustle-and-bustle that you or I would consider “normal” can just be way too much for them to handle, so they either shut-down or meltdown. Sensory processing issues can be crippling at times, and all of it definitely plays a big part in where we can (and can’t) take Lila successfully. She has to work incredibly hard just to be “OK” in our world – every single day.

Play dates are the most difficult thing to watch (for me, anyway). Our daughter and our life are completely normal to us – until I’m faced with “typical” children her age. Seeing children genuinely try to interact with Lila; call her name, go up to her and speak, follow her around, and attempt to play with whatever she’s playing with – and watching her get upset and run away – it’s brutal.

 5.) Medical Decisions

ALL parents are nervous when their child goes medical tests, procedures, surgeries, etc( and we’ve been through plenty of them). However, once you have seen your child have a regression due to something no one was able to warn you about (ie nitrous), it takes that paranoia to a whole new level. I second-guess everything, and do more research than you can possibly imagine on a myriad of topics you’ll never have any need to know about (ie MTHFR gene mutations).

She has fought SO hard to get where she is, the thought of us making a decision that could cause us to “lose” her again is beyond terrifying.

6.) Friends/Family

We used to have more friends (and family for that matter). The truly good people stick around, and there are those who don’t. It’s a lot to deal with – totally understandable. If you’re not willing to put in the work to actually interact with Lila on her terms, or if you look at her and treat her as “less than” – she doesn’t need you in her life – and neither do we.

 7.) Holidays

All of us have these preconceived ideas about the holidays and what they “should” look like. There are a lot of things about the holidays that those with ASD find difficult to deal with (change of routine, crowds, the noise, new and different smells, traveling, etc). We have had to ditch a lot of the old ways of doing things and find ways to celebrate the holidays that are new and different – we create our own “normal”- and just do what works best for our family.

8.) Communication

We don’t have a child who runs to us yelling “Mommy! Daddy!” and hugging us. That’s just not how it works with Lila. We’re so incredibly grateful for where we are now – a year and a half ago (to her) we didn’t exist. She wouldn’t acknowledge us hardly at all. Nowadays she follows us around wanting to interact with us – it’s incredible! She is still currently considered “non-verbal”, and trust me – she loves us just as much as any other child loves their parents (I can FEEL it!) – she just shows it in a different way, such as resting her head on my shoulder, touching her forehead to mine, etc.

She cannot talk, point, etc. so she uses PECS (picture) cards to let us know what she wants. She may also push us and squeal to try and get us to do something she cannot yet communicate. Having a toddler with an average or above-average IQ who cannot effectively get across her wants and needs is beyond frustrating for her – we continue and try to help her develop new ways to help her use her own “voice”.

Because as cute as the meme is – I don’t WANT to be her voice. I want her to be able to speak for herself!

 9.) Therapy & The “Language”

I rattle off acronyms when I’m talking to people about what’s going on: IEP, PDD-NOS, ASD, NT, PECS, MTHFR, IFSP, DD, EI, GF/CF, ABA, the list goes on and on. It’s just part of our everyday language. Therapy – a loaded topic nowadays within the autism community. You’re either primarily an ABA family, or a Floor-Time/Play Therapy family. We’re the latter. I have nothing against ABA – I just think different methods work better for different children. Either way you go, it involves about 40 hours a week. With ABA, professional therapists are doing the work with the child, and with floor-time it’s the parents working round the clock on new and existing techniques.

 10.) General Outlook & How we Live Our Life

There is an increased level of awareness for disabilities of ALL kinds, and a vulnerability that comes along with that – “those things” don’t happen to “other people”, they can happen to us – any of us – at any given time.

Lila stopped hitting the typical milestones a long time ago. We live our life at her pace, and nothing (I mean nothing) is taken for granted. We are truly grateful for each and every accomplishment, no matter how small it may seem. We no longer sweat the small stuff – there’s no time for that! We live day-to-day, and have honestly become all-around better people because of our daughter. If I could only choose one child in all the world – I would choose her, every single time. She has been (and no doubt will continue to be) one of my greatest teachers.

Lila has made (and continues to make) so much progress – 2015 is off to an amazing start for all of us!

She repeated her name for Bill several times this morning, and when she knew it was time for daycare – she ran around to grab the items she knew she wanted to take with her to daycare!!!

This weekend she would bring Bill’s hat to me for me to put on. When I did, she would giggle and say “dadadada!”.

Her increasing awareness is nothing short of astounding to me.

We recently transitioned her PECS cards from lying on the coffee table to being attached with magnets to a white board. She transitioned seamlessly, and both her primary therapist and I agree that a month ago that wouldn’t have been the case. Lila sets the pace, and she lets us know when she’s ready to move forward.

Bath time recently got much worse during a break in the routine, and was ruined for close to 3 weeks before I could get her back in the tub (with me), for approx. 30 seconds without a meltdown.  We’re back on track for the moment – she will let me know when she is ready to move forward.

The more we immerse ourselves in her world, her interests, and mimic her – the more willing she is to meet us halfway. And that’s the way it should be – of course I want Lila to be able to function to the best of her ability in this world, but I never want her to feel that she is “not enough”. She is more than enough just by being her beautiful little self. I want to make sure we continue to foster her natural inclinations and gifts so that they don’t get lost in the fray.

I typically mention the moments where Lila has turned a corner and learned something new, showed a new skill. The truth is – there are so many moments where I am the one who is learning from her. She has been my greatest teacher.

This weekend we had one of those moments that I will share with you:

We were playing on the floor with some toys. She grabbed a pink string of pom-pom garland. She touched it and smiled at it, then handed it to me. I thanked her, and put it around my neck. I told her how pretty and soft it was – then I placed it around her neck.

I reached for my camera to take a picture. She looked me in the eyes, took the camera from me, and threw it behind her. She then took the pom-pom garland and handed it to me again. I could FEEL it radiating from her – “THIS is what we’re doing Mama, THIS is what’s important”.

I almost cried. Enjoy the moment – thank you for this week’s lesson, Lila Bliss ♥

Therapy went really well today. Lila even used the “flip” card! That’s a big deal, because in the past she has used the PECS cards for food and drink – but refused to use them for actions.

We did some motor imitation back and forth that included patting and clapping. We’re starting work on our first visual schedule (for going to get a pizza), and introducing her to a social story on the iPad this week as well.

She continues to say “yeah”, “yay” and “go” in various (and appropriate!) situations. She’s starting to grab our hands when she wants us to do something with them (what it is she wants depends on whether or not she’s working with Bill or me).

Continued improvements with social interactions and joint attention – she starts at the developmentally delayed preschool program here in Mustang this summer – so excited to see what 2015 brings!

We cling to it like a lifeboat – “The Routine” – I know a lot of you live the same way. We do things the same way every day. Transitions stay the same – since autism prevents Lila from making sense of the world any other way, those transitions are extremely important to her. What we do, time of day, the songs we sing – it all matters a great deal more than most typical families can understand.

What never ceases to amaze me is how fragile the routine actually is… this has been evidenced through our past experiences, like our bath time troubles. Lila genuinely loves bath time, always has! She loves to stay in there and play for at least 45 minutes on most days. However, a couple of times before (and now once again)…. something negative happens. This particular time she had to let go of “Monkey Blanket” to get into the bath. She was unable to put herself back together, and bath time turned into a full-on sensory meltdown. Instead of that being the anomaly, it instead became the new normal – going on about 6 days now.

Our therapist Janet explained it like this, and I found this metaphor extremely helpful:

“To me (from what I have gathered), it seems like for people with ASD, events run on thousands of tiny movie reels, where each action in real life should connect smoothly and predictably to the next, like it did last time. If not, it’s just too much. If a new unpleasant thing happens, it’s like the bad spot gets “relived” and rewritten at that exact moment when it occurred in the sequence. Then the anticipation of it coming up in the sequence the next time the reel starts infects the whole track back up to beginning. ”

So that’s where we’re at now. The “reel” has been infected all the way back up to the beginning. Now, the sound of the water running sends her anxiety through the roof. Janet also recommended that “the more visual cues are that the old reel is intact (or how a person can handle a glitch), the better it goes”. We will be working on this all week, and formulating ideas and pictures to start using visual picture sequences for other routines as well.

Wish us luck – we will let you know how it goes!

Last year around this time, our lives had been thrown into complete chaos. At Lila’s one year check-up, the discussion inevitably turned to some of Lila’s “red-flag” behaviors for autism: she was not pointing, not wanting to play with her Daddy or me, not responding to her name, not looking when we tried to point at something, very little eye contact, not interacting with other children at daycare…

After her initial developmental assessment, Lila started therapy with SoonerStart at 15 months of age. At that point, she would barely even acknowledge my husband and me. She was often in her own little world. It was scary at times, when we couldn’t get to her. We were terrified that we’d lost her.

We were beyond overwhelmed, and our heads were spinning. What did this mean? What would Lila’s future look like? Would she ever be able to live on her own? How in the world were we going to give her all of the help she so desperately needed?

In October of 2013 a woman named Janet entered our lives – and she would change everything. She is (by trade) a Speech Language Pathologist, although she is very well-rounded in all areas of therapeutic services. Through SoonerStart, she is contracted to come out and see us once a week for a 1 hour visit. During our sessions she taught my husband and me how to get into Lila’s world, and help draw her more into our world in the process. But that’s not all she did….

Janet and I have been in constant contact since then.  I just counted and over the past year we’ve exchanged over 350 e-mails! She successfully helped us navigate through the initial shock of how far behind Lila was developmentally, saw us through the official diagnosis of autism, and acted as a sort of family therapist in the process as well. She’s our “go-to” person for information and advice on all things Lila. Receiving one of her lengthy e-mails jam-packed with links and all sorts of useful information is my version of Christmas.

The change we’ve seen in our daughter is unbelievable. She wants to play with us, seeks out those interactions. She’s mimicking sounds, some actions, and has started to say “go”, “yeah”, and “yay” in the correct context. She has started using PECS cards to tell us what she wants to eat or drink. Little by little, we’re breaking down the barriers and are finally starting to communicate with Lila.

Janet swears that (not unlike Mary Poppins), she is giving us the tools we need to help Lila thrive and succeed – and that one day, we will not need her anymore. However, we just cannot imagine our lives without her. She’s beyond selfless – she will say that all of Lila’s progress is because of Bill and me – that we are the ones who put in all the time to actually follow-through with her suggestions. She’s an angel (I’m fully convinced), and she came into our lives for this very important purpose. We’re forever grateful; she’s family now, and always will be.

What better way to thank her than to make sure everyone knows what a kind, generous, and amazing human being she is?

I mean, she helped give us our daughter back…. and I cannot think of a more profound gift!

Ah, the Holidays…..

They always end up being so hectic and stressful. Add an autistic child in the mix and things become even more chaotic. I wrote to our therapist about Lila and Christmas. The truth is – the gifts mean nothing to Lila. She could care less. Know what SHE wants for Christmas? Her balloons and ping pong balls, and for Mommy and Daddy to be at home playing with her.

See… we  all have these preconceived ideas about the holidays and what they “should” look like. Baking cookies with our children, watching their eyes light up while we explain to them about Santa and the reindeer, listening to Christmas music, decorating the tree together, having a picture taken with Santa, going to look at Christmas lights, visiting family, all while our perfectly wrapped presents sit under the tree.  And we don’t stress – we just ENJOY the holiday season, right?

Is that REALLY how it is for anyone?!? I have my doubts. You know…we’ve already re-arranged our entire lives for Lila and her autism, but for whatever reason, it never occurred to me that we could flip the script on the holidays as well. Our SoonerStart therapist Janet sent me the following in an e-mail. I genuinely believe it’s something ALL special needs parents need to hear, so I wanted to share it with you:

“There are SO many social norms and expectations surrounding the holidays. It’s like there is a big book of items that are stereotypical and everyone feels if they aren’t ticking off a certain number of them, they aren’t doing it right. So many holiday things are hard for people with ASD. Different foods/cooking smells, more often or longer travel times to infrequently visited homes with unfamiliar people and a different schedule, things you can’t touch, sitting on Santa’s lap, opening gifts, more shopping trips, all the forced social interactions, I could go on and on….

This is a great opportunity to ditch all the “normal” expectations and start to develop BETTER, new, fun, ways for you all to do the holiday thing. Free yourself from all that garbage and follow her lead. You can celebrate in an AUTHENTIC and true way to your family. Your special twist on things will mean so much more to her than ANY gift. It’s kind of exciting and freeing isn’t it – to get to rewrite the book and tick your own things off? You are going to have a much better time than a lot of “normal” families. Makes you almost feel sorry for them…. :-)”

So…. Please take that advice and do as you wish with it. I hope it helps you and your families like it has helped me. Our holidays won’t ever be what typical families would consider normal, but maybe – just maybe… they will be even better. Happy Holidays and much love to all of you and your beautiful, different little families!

Lila has started making an unbelievable amount of progress lately – she’s doing something new almost each and every single day! I wanted to write down some of my general thoughts on this because (oddly enough) this has caused mixed feelings on my part. You would think it would be all JOY, that I’d be ecstatic! Well… I am (for the most part). But I also remember all too well where we’ve just come from…

As an infant Lila would scream and scream for HOURS on end. Reflux, GI issues, ear infections, projectile vomiting. It was honestly like she was not compatible with our world from the get-go. It was very difficult for her (and for us) just to make it through the day.

Three months after she turned 1, we started therapy with SoonerStart. When we began, she wanted nothing to do with either Bill or I, it was like we didn’t exist. She would wander throughout the house, performing the same patterned rituals over and over and over. She didn’t play with any toy as intended, she would just flip whatever-it-was over and over and over….

I could see it in her face, and it terrified me to my core. If you’re an autism parent you know the look. I thought we’d lost her. I just couldn’t get through to her, couldn’t reach her anymore.

So…. here we are. We have the little girl we fought so hard for. She’s made so much progress, I’m so proud of her! Yet my profound happiness is tinged with fear. I’ve seen certain skills become transient, not necessarily permanent. What if she regresses? What if we lose her again?

I have never been a part of something so profound to witness – watching the therapy that we have poured into her for the past year start to manifest itself out of nowhere. Concepts and ideas once so far-fetched are now clicking left and right. Our primary therapist (Janet) has always said that we would see tremendous growth between two and three years old. It looks like she was right…as always. Forever grateful to the woman who has worked side-by-side with Bill and me on a daily basis to get Lila to where she is now.

Continually marching forward – with no idea what the future holds. Working as hard as possible to help her be the best Lila she can be, with the utmost respect given to who she is as an individual at her core. I’m so excited about everything that’s been happening – our Little Lady is such a rock-star, she never ceases to amaze me. Someday, that beautiful little girl will laugh when I tell her how worried we once were.

Today’s therapy session will be focused on a NEW technique for Lila. We will be showing HER cards instead of vice versa. We will be working on the following: Stop, Go, Not Now, and Wait.

These concepts, which involve a VERY difficult concept for Lila (patience), are going to be a very long process. I don’t anticipate it to be fun AT ALL. Deep breaths…

I always hope that Lila inherently knows that all of us are doing this work with her from a place of pure love… here is a letter for you when you get a bit older, Bee.

My Dearest Honey Bee:

I won’t lie to you…this is probably going to suck. This is going to be VERY difficult for you (and us as well).

You will scream, you will cry, and you will shake. You will look at me with desperation in those beautiful big blue eyes of yours, and worst of all for me – I will see the look of abject hurt and betrayal in your eyes when I do not give you what you want right NOW.

But we’ll get through this, I promise. We’ve been through a great many struggles in your life already, and we always make it through. There’s a light at the end of the tunnel, sweet girl. We’re going to make it – and when we do we will finally be able to know what you want, how you feel, and what you think – I want to know ALL of it.  If it’s the last thing I do – one day we will be able to communicate baby, I swear.

You know, nothing has ever been easy for you, and for that I am truly sorry. Watching you struggle on a daily basis literally breaks my heart. But my Love, you are SO strong, and you’ve made your Daddy and me strong as well. We’re both better people because of you. Everything we do is for you, baby, and it is all done with the utmost love and respect of who you are as a person.

We’re a Team – your Daddy, Janet, and I all love you more than you will ever know. This may NOT be fun, but just hang in there with us baby – it WILL be worth it in the end, I promise.

As most of you know – Lila has just started to be “OK” outside, as in we have never been able to put her down outside and have her be fine with that. This week she finally started to LIKE being outside (only in our own front yard/driveway). She runs to the door when we open it now! Awesome, right? Well, in the past couple of days we’ve run into a big problem… guess where she wants to go?

She RUNS full-speed down to the street, and tries to sit down with her ping pong balls to play. We have to scoop her up and she instantly starts shaking and screaming bloody murder. Someone saw this happen yesterday and literally stopped their van in front of the house to shake their heads and stare at us.

They just stopped in front of our house to watch Lila screaming, then running towards the street, me restraining her, her losing it (repeat). I hope they enjoyed the show…

On a serious note: obviously this is dangerous behavior and we will find a way to remedy the situation. I’m honestly shocked at how she’s gone from being so timid outside to literally running down the street. She has never responded to her name. She just takes off as fast as she can and doesn’t even look back…. She has NO FEAR.

And that – for me anyway – is terrifying.