Progress

IMG_2458

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.

Advertisements

Dear Lila: A Letter for You

IMG_1508

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.

No Fear

IMG_1055

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.

How We Got Lila to Wear Her Glasses

LILAGLASSES

I’ve been asked quite a few times about HOW we get Lila to wear her glasses. ASD + Sensory Issues = Glasses Disaster. Truth is – 6 months ago Lila would scream and completely LOSE it just at the sight of her glasses. Now we’re up to 3-4 hours per day with her wearing them.

All of these kids are different – but I can tell you what we did in case it might help any of you have little ones with glasses who also have sensory issues.  This particular idea was tailored to Lila by our SLP (and resident Mary Poppins) from SoonerStart, Janet. We had a ton of trial and error, and here is what eventually worked for US:

A year prior, Lila had been wearing them for an hour at a time – we moved way too fast, and she regressed with them: big-time. SO we re-introduced them very slowly. We put them in plain view randomly around the living room, eventually we moved them to the coffee table (Lila’s “hub” for everything).

Next we picked a TV show that she LOVES. “Signing Time”: the alphabet episode. It was a huge motivator for her, especially when Rachel was singing. SO when Rachel would start to sing, we would pause the show and say “Time to put on your glasses!”, quickly put the glasses on her, then hit play on the DVR (sometimes holding her arms, waving them around, etc. to distract her).

If she pulled them off her face, we would pause her TV show again. I’d say “What happened? Ohhh, you took your glasses off. You have to wear your GLASSES to be able to watch Rachel!”. Then we’d put them back on and immediately hit play as soon as they were back on her face. Eventually she GOT it, and was fine with wearing the glasses, but only in parts of the episode where Rachel was singing.

Slowly but surely she started to leave them on for short periods of time. The rules stayed the same – I would only put glasses on when Rachel started to sing, and she was allowed to take them off when she wasn’t singing – no pressure (she FEELS that, she is so intuitive and so sensitive to what we are thinking/feeling).

She has now realized that she can see better WITH the glasses, which leads to her leaving them on for longer periods of time. We have our good days and our bad days, but I don’t force her to wear them, and that has led to her wearing them now more than ever. She has to feel like it is HER idea for it to be successful.

The eye doctor recommended at one point for us to MAKE her wear them, use atropine drops in her eyes so she couldn’t see at all without them, etc. We had to make a decision on how to approach this, and there were only two options: go head to head with her, or take the long way around. I knew if we went head to head with her on this – we would lose. Every single time. Lila is incredibly intelligent, and extremely head-strong. We either had to trust the doctor, or trust our knowledge of who Lila is and how she works.

This route was VERY lengthy and incredibly labor-intensive (we HAD to stick to it for it to work, pause the show every single time she took the glasses off, etc.) Consistency is crucial, and I feel that it has been incredibly successful with her. We will continue to try and work our way up to more and more time with the glasses, for now we are just incredibly proud of the Little Lady, she’s come a very long way in such a short amount of time (on many levels).

2014 Family Photo Session #1

family

FYI: The picture above was our Christmas picture taken last year. I have NO idea when the photographer got this shot, because about 1 minute into our 15-minute session, Lila had a complete and total meltdown. She was NOT a happy camper (until we were done and heading out the door – then she seemed to be pretty happy about the situation).

Today’s Topic: Family Photo Sessions:

This past weekend we had our first family photo session of the year  – we have scheduled TWO this year to try and make sure we get at least one good photo! Because honestly? The outcome all depends on her mood and the situation on any given day. This past weekend was the first one scheduled – a 15-minute “mini session” out in a field. We got there and took our places next to the vintage truck with a fall-type setup including a multitude of pumpkins.

It was immediately apparent that Lila was NOT having it. The sun was hurting her eyes, she didn’t want to look at the camera or smile, and she most certainly didn’t understand why the Hell we were out there when we could be perfectly happy sitting at home.

She wouldn’t cooperate AT ALL (why would she want to look at the camera when there are so many pretty colors and pumpkins if she looks the OTHER way?!?).  So when Bill was holding her I took it upon myself to run behind the photographer and started jumping up and down, waving my arms, crowing, and dancing like a crazy person. She loved it – super stimmy = big smiles. It worked! Then Daddy handed her off to me and he went behind the photographer to dance and be silly – again Lila was stimming like crazy, and ended up accidentally hitting me in the face a few times! I think we got a decent shot though…(I hope!).

The family photos of all three of us are always next to impossible… since neither one of us is behind the camera acting like a raving lunatic. Bill and I kept trying to switch sides, bouncing her up and down, trying to get a smile, trying to get her to look up – the whole thing was 15 minutes of absolute insanity. Once we were done, I felt like we had just run a marathon. I was SO proud of her, regardless of what pictures we end up with. Things like that are so incredibly difficult for her, and she did the very best she could that day.

As we piled into the van to head home, the next family took their place for photos. The Mom and Dad walked over and sat in the truck bed, and their two little girls stood where the photographer told them to as well. They all looked at the camera, and started their photo session. I couldn’t help but think “SERIOUSLY?!?” because it’s THAT easy, right???

Family Photo Session #2 is slated for next Monday… wish us luck!

One Year Ago Today – The Developmental Evaluation

Blogpic

One year ago today, Bill and I took Lila to her developmental evaluation with SoonerStart. That initial assessment at around 14 months is the one that hit Bill and I like a runaway freight train.

We had done the research, and we could see the writing on the wall – but to have someone ELSE say the words?  To see how “below normal” her scores were in every single category…. it absolutely gutted me. I will never forget that drive home with my husband. I knew our lives would never be the same.

Honestly, it’s extremely difficult for me to look at the “big picture”. It’s just way too much to handle, and the future has way too many unknowns. But when I DO stop and think about where we WERE in October 2013, and where we ARE in October 2014, it feels nothing short of miraculous:

October 2013

  • Lila would not interact with us – no real communication whatsoever
  • She would not respond at all when we spoke to her
  • She would wander around the house aimlessly, stuck in her own little patterns and routines
  • She flipped objects constantly and would hardly ever look up at us
  • She only showed interest in electronic toys – toys that light up and make sound, or spin
  • She didn’t seem to notice or care when we left the room, or left her at daycare
  • We couldn’t take her outside much, and if we tried to set her down outside she would lose it
  • She was not able to sit in a stroller at all (instant meltdown), so we had to carry her everywhere

October 2014

  • Lila loves to play with us – she will come find us in another room just to interact
  • She is using a modified approach to PECS cards: she can tell us when she is thirsty and when she is hungry (and even what she wants to eat) She loves bringing us the cards, and sometimes uses them just to have that positive interaction
  • She babbles constantly, and has started to repeat words or sounds AND display motor imitation that she hears and sees both from the TV and from her Daddy and me
  • For the many things she is unable to communicate yet, she finds little ways to try and get her point across (ie pushing us to where she wants us to go)
  • She loves board books, bouncy balls (she will roll a ball to us!), she plays with balloons, etc.
  • We can go places with her (although it’s still challenging) – restaurants, stores, even the park. She will even sit in a stroller now.
  • She’s using the iPad to play games and even create little works of art!

How can you thank someone enough for GIVING you your child back? I know Bill and I are the ones who do the work at home with her, we involve therapy (in one way or another) into almost every single one of our interactions with Lila.

BUT…if it weren’t for Janet…. it makes me all teary-eyed just thinking about it. The truth is, if it weren’t for Janet – we wouldn’t have the little girl we have today. We will never be able to thank that woman enough. There are just no words. She gave us the tools, showed us HOW to get into Lila’s little world, and to slowly (but surely) help draw her into ours.

We still all have a VERY long road ahead of us, but we will continue to take it one day at a time, and celebrate each and every step she makes. No accomplishment is too small – we don’t take ANYTHING for granted at our house!

We didn’t listen… and that has made ALL the difference.

Blogphoto

We heard it at every turn: “She’ll be fine”, “What are you so worried about?”, “My friend’s kid didn’t talk till he was 4”, “She seems normal to me”, “You’re being paranoid”, “Don’t worry, just give her time”.

But I knew. I knew Lila was different. She was our first child and I still felt it was fairly evident from a very early age. Something wasn’t right…. she had terrible colic from the beginning, and would scream for hours and hours on end, she had GI issues, and sleep problems as well.

The closer she got to 12 months old, the more evident it became. Lack of eye contact, lack of response to our voices – I honestly thought she was deaf. She was never a fan of people other than Bill and me, and she was a mess if we strayed from our normal routine.

Along this journey we were accused of “creating the problem”, “self-diagnosing”, and a myriad of other incredibly hurtful accusations.

Through it all, Bill and I stuck to our guns, which was NOT easy to do. As a Mother, nothing made me feel worse (and more “Munchausen-y”) than people insinuating that we were “self-diagnosing”, like we WANTED something to be wrong with Lila. It absolutely killed me. It would have been SO much easier to bury our heads in the sand and pretend nothing was wrong. Trust me, there were times that we both desperately wanted to do that.

But Lila needed us, and we were determined to do every single thing in our power in order to find out if something was actually going on with her (and if it was) to confront it head-on as soon as possible. If we were wrong… GREAT! No one wanted that to be true more than Bill and I did, trust me. If we were onto something – Lila needed our help.

After her initial 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 I couldn’t get to her. I was terrified that we’d lost her. She was officially diagnosed with Autism Spectrum Disorder at 21 months old.

We still have a very long road ahead of us, but we have come such a long way in the past 11 months – and we are so beyond grateful. The little girl we have now is NOT the little girl we would have at this point had we not stayed true to ourselves, to Lila, and worked with her every single day for the past 11 months.

BECAUSE we didn’t listen to everyone else, Lila’s future was forever altered – in a positive way. Early intervention completely changed the trajectory of her brain and social development. I cannot say enough about Early Intervention and how important it is. My only regret is that we didn’t know more and start prior to 12 months of age.

If you KNOW in your gut that there is something different going on with your child – please listen to that voice. Don’t give up no matter what. It could very well mean all the difference for them and their future.