I don’t write about my husband Bill very often (he doesn’t particularly like his own personal details being shared), but I felt strongly inclined to do so today.

You see – there are different kinds of love. There is the superficial “bring you candy and flowers” type of love, and there is what Bill and I have – which is the “she’s in the middle of a massive meltdown, please grab some milk and a blanket and let’s get through this as a team”-type love.

He had no idea what he was getting into when he met me. He was the extroverted, popular, party-type of guy. I was the introverted, socially awkward yet extremely loyal (and nerdy!) type girl. On paper it probably shouldn’t have worked. But it has. Better than anything I ever could have imagined.

He works at least 60-hour weeks on a different schedule than me – he takes Lila to school in the morning and picks her up, takes her to daycare, works a full day, then comes home to play with Lila before bed. I love to watch those two together.

Our Little Lady has very individualized relationships with both her Daddy and me. I am safety and predictability. I follow the routines, I know them like the back of my hand (her routines are now my routines). Daddy on the other hand is allowed to be unpredictable and fun – from him (and only him) – she accepts and loves that particular way of being. I know how she feels. I probably never would have gone anywhere or done anything if it weren’t for him. I was the good girl – I was too unsure of myself, had too much anxiety, and didn’t want to make any “wrong” decisions in my life.

Because of Bill I moved out of my home state for a couple of years, I traveled: we got married in Key West, we went on a Caribbean cruise, we got scuba certified and dove in Ambergris Caye, we climbed Mayan ruins together in Belize. We made tons of decisions that I never would have had the audacity to make on my own. And now we are on the biggest adventure that either one of us have ever encountered together – parenthood with our beautiful (and autistic) daughter Lila.

Bill has been (and always will be) the most amazing Daddy to Lila. How do I know? Because he loves and accepts me for who I am – socially awkward, quirky, and nerdy as all get out. He won’t ever judge Lila, or love her any less for being who she is. He will help her learn and grow in the same way he has done for me, and she will adore him for it. We couldn’t be in better hands, Lila B! ♥

Lila has been doing very well in her special needs pre-K class! She loves her teacher – and her biggest challenges at this point are a.) recess, and b.) lining up at the end of the day. We continue to work with her but she wants absolutely nothing to do with being outside at this point (the school can’t get her outside either). Luckily, they leave the door open and let her stay inside while the others go out and play on the playground.

School pictures are next week (same day as our family pictures, actually!). Her teacher is sending home a social story today so we can go over it at home, and they will be covering it in class this week as well. Picture Day involves both lining up and waiting, a schedule change, bright lights, lots of children, and an unfamiliar setting. I know they will do the best they can to make it as easy as humanly possible on both her and her classmates – fingers crossed!

Recent Developments & Random Fun Stuff:

• Lila Videos:

She loves sitting in my lap and watching videos of herself. Videos of her walking into school, taking a bath, dancing to the Bubble Guppies, vocal imitation, and getting her nails trimmed. You name it, she loves it. It’s become a great tool to aid in her therapy.

• Speech:

We’re seeing things pop up here and there. For example, the other evening around bed time I asked her “Are you ready to go to bed?”…. she just turned and said “yeah”. I couldn’t believe I had heard it so I asked again “So…. You’re ready to go to bed?”, she said “yeah”, grabbed her blanket and lifted her arms to be picked up. Absolutely incredible.

• Sensory:

She’s playing with Play Doh – she asks for it with a picture card every single day now!

• Leading us by the Hand:

She used to push us, now she is taking us by the hand to drag us from place to place, and she’s getting much better about making her exact wishes known. A couple of examples: She led me by the hand into the kitchen, then put my hand on a beaded necklace that was poking out of the bottom of her toy shopping cart. She led me to the fridge yesterday and looked up. I lifted her up and she grabbed a magnet off of the fridge. A couple of months ago each of those situations would have been her screaming in the general area of whatever it is she wanted.  Incredible to see the difference!

• Dinner Time:

Lila loves dinnertime now – she still eats “on the go”, but when Bill and I eat, she wants to come over, sit in my lap, and feed me. She also takes this opportunity to taste new foods as well! She actually put 2 curly fries in her mouth last night – then fed them to me but hey, that’s progress!

Along this same general wavelength, she loves to “feed” me items around the house. Play Doh, magnets, toys, trash, etc. LOL I either pretend to eat it, or put it in my mouth and say “yuck!”, then spit it out. She also thinks this is pretty flipping entertaining – I’m like the live-action version of the “Toca Kitchen” girl!

• Bath Time:

Bath time is still very structured and rigid. She hasn’t actually sat down in the bath tub in over 9 months. However – she is starting to relax just a bit and have fun even! We play with the stacking cups – I say “ready, set, and sometimes she says “go” then I list up the stacking cup and say “wheee!” as the water pours out of the holes in the bottom. She loves it, I’m so happy that she’s having some fun during bath time again!

• New Cards:

She has been using some of the new picture cards I made – “Counting Bears” (she can color sort like a champ now, and sometimes seems to be testing me to see if I know the difference!). She has been using the “Read Books”, “Play Doh”, “Color” (she likes to play with the crayons and move them from place to place), and “Cupcake Puzzle” (one of her play therapy puzzles) as well!

Funny Story:

One of my most dreaded moments is when Lila breaks something, then brings it to me to fix. I’m Mom… I’m supposed to be able to fix everything you know. Immediately. Or there will be a meltdown. I avoid these times at all costs. So recently right before bed, Lila tore the head off of a small plastic wiggly snake toy. She brought it to me, handed me the head, and looked at me all panic-stricken.

So…. (not my finest moment)….. but I totally pretended to eat it. I panicked! I wans’t sure what else to do, I couldn’t “fix” it! Well, her breathing immediately slowed and she was intrigued. She leaned in….. then she proceeded to try and feed me the REST of her snake 😉

She stopped hitting the traditional milestones a long time ago. There were choices to be made; different paths we could take in order to proceed with her diagnosis and therapy options. What was more important… who Lila is vs what Lila can do, what Lila enjoys vs what is socially acceptable, and the way we were used to living vs what Lila is comfortable with. The answers were easy for us.

I used to think success meant a lot of different things: living independently, having a great job/career, having plenty of money, two kids, a nice house and car, etc. Lila has changed the way I think about many things, and the definition of success is just one of them. She has been (and will continue to be) my greatest teacher.

For Lila – I just want her to be happy, to be a good person – and all she really has to do is just BE (herself). Will she be able to live independently, talk, drive, have a job, etc? Maybe…. maybe not. We have no way of knowing. If not – it doesn’t matter – even if she lives with us forever, she is a raving success in my eyes. She works so hard every single day just to be “OK” in this world. Not many can see just how far she has come already. We will champion her every step of the way to be the absolute best Lila she can be – we always have, and we always will.

But it is of the absolute utmost importance to me that she knows – without a shadow of a doubt – that she is (and always has been) more than enough, that she is a kind of brilliant that society may or may not ever fully appreciate, and that she is loved no matter what skills she does or does not acquire. Her worth is not determined by her accomplishments – she will forever have our unconditional love, acceptance, and respect… just by being her beautifully perfect self.

Halloween is next month, and it has always been (by far) my favorite holiday. There have been a few different phases thus far:

• Growing Up: Get dressed up and Trick-or-Treat along with every other kid in the neighborhood.
• Adulthood (Pre-Lila): Get dressed up and go OUT! ß I miss this one, I can’t lie!
• Adulthood (Post-Lila): Still trying to figure it out.

See …we all have these preconceived ideas about the holidays and what they are “supposed” to look like. I know what Halloween consists of in regard to neuro-typical children, but a LOT of the components of this holiday: wearing a costume, going to the pumpkin patch, trick-or-treating, and eating candy are either a.) difficult for Lila, or b.) of zero interest to her.

So with Halloween (not unlike other holidays), we are trying to follow Lila’s lead – and find a NEW way for our family to celebrate and find out what works for us. So for this year I’m considering the following:

• Halloween-Themed Toys
• Halloween Sensory Bin
• Halloween-Themed Cartoons
• Trip to Pumpkin Patch/Farm in a cute Halloween shirt (if – and that’s a BIG if – she is OK with being outside at that point).

There are also Halloween parades and local carnivals, but I think those would be dicey depending on the number of people in attendance and noise level (and the fact that they’re outside could be an additional hurdle as well).

Regardless of what we choose, we will make sure it is fun for Lila, and as always – done with lots of love.

I hope that each of you  – no matter how you and your beautiful families choose to celebrate  – all have a very Happy Halloween as well!

Lila is doing extremely well in her special needs pre-K class. Bill and I couldn’t be any prouder of her – it has truly been incredible to watch her adjust to her new schedule. We do have a couple of things we’re focusing on right now, and I’ve outlined them below:

Challenge #1:

The Routine

Lila is really starting to find her groove with her new special needs pre-K schedule. Last weekend on both Saturday and Sunday (despite the visual schedule), Lila became upset that the order of events wasn’t more like her weekdays. She saw her shoes and it was time to GO! When I tried to just drive her around the block it wasn’t good enough – she wanted to go somewhere. There appears to be just too much of a difference for her to adjust to at this point.

The Potential Solution:

In an attempt to make the weekends easier on her, Bill and I are implementing a new weekend schedule that will more closely mimic her weekday schedule.

Challenge #2:

Communication Frustration

Obviously…. she is a very smart Little Lady. She gets upset (and hurt) when she feels we can read her mind but that we just choose not to comply. Last weekend there was something in the kitchen she wanted me to do, and for the first time in a very long time I couldn’t figure out what it was. There were a lot of meltdowns.

The Potential Solution:

In an attempt to expand her options, and to try and give her more choices before she melts down, I made a bunch of new picture cards this week (16 or so I think). So that when she is upset, I can take her to the board and have her “use her words”. In addition to food and drink, I added a number of activities and toys for her to choose from.

Fingers crossed on both accounts – I will keep you updated on our progress!

So I changed my hair color dramatically yesterday. I was most nervous to see what Lila’s reaction would be (any sort of deviation or change is typically not received well).

When I got home I picked her up and put her on my lap – she kept looking at my hair very closely, inspecting it, touching it, smelling it.

Then after a minute or two, she finally touched my nose with her finger and smiled. Approval and love from the Little Lady 💖 It’s amazing how much she can say without words.

I was still her “mamam” and that tiny little moment made me SO happy, my heart felt like it was going to burst!

Well – it happened. Lila started school on August 20^th, 2015.

We had planned not to let Lila see me at all on her first day of special needs pre-K (since it seems to be so much harder on her when I’m there). She had been really clingy with me during Open House, and that’s when I made the final decision. I was sad about it….but it’s not about me – it’s always about what’s best for her.

But – as they sometimes do – plans changed. We had a flood at our business early that morning, so I had to take Lila to school while Bill went to the shop, then we both cleaned until it was time to go pick her up. Lila had a rough go of it on the first day – but the teacher said it wasn’t the worst first day she’s ever seen – we’ll take it!!!

Despite the complete insanity that went on that day, I’m so grateful that Bill, Lila, and I were able to pull together and make it all happen. We handled the flood at Custom Reef Creations and Lila’s first day of special needs pre-K all before noon! I love my little family so much, we make such a great team ❤

Since that first day they have agreed to let her have a few hair trusties to fidget with – I’m so glad, that should help her regulate herself much better. We dodged a hair twisting issue (thanks to Janet who substituted curly ribbon instead), started attempting a simplified visual schedule, and today Lila had a fire drill – not the best day for an autistic toddler with sensory processing disorder but she made it through!

I know that this transition has been hard for her, but she’s handling it like a champ. Here’s to hoping it just gets easier and easier for her – can’t wait to see where she’s at by Christmas!

I haven’t been writing much lately. Between our dog Boomer having his back leg amputated, my husband’s impending back surgery, and Lila starting school next week…. I just can’t.

You know how you hold your breath when a roller coaster starts down a steep hill? That’s exactly what it feels like right now. There are a million things that could occur and totally derail us, but I can’t stop to think about any of that right now. We just need to keep moving forward – one day at a time.

I assume I will start writing more once things have calmed down a bit….  but for now I’m just holding my breath and praying that everything works out.

It seems like every now and then Lila goes into overdrive and we start seeing so many changes that all happen at once. Now is definitely one of those times! She is doing so many new things, and in no particular order:

1.) New Skills:

• Color Matching on her Toca House iPad app
• If she accidently knocks a bowl of food off of the coffee table, she picks up the bowl and puts it back on the table. Then she goes around picking up every piece of food and puts it back in the bowl as well!
• If I give her a choice between two picture cards, she will hand one to me, then walk back over to the whiteboard and put the one she doesn’t want back up on the board for later.
• Trying some new foods here and there – Bill tried to give her some grilled cheese recently. She didn’t want it, but she picked up the two pieces and brought one to Bill, one to me, and said “Mmmmm” while she made sure we ate it!
• She is letting us put her hair up from time-to-time – and sometimes she even leaves it up (especially when Sage does it – Sage is “allowed” to do things Bill and I are not – like trimming her nails). Like most of us, she definitely has a different set of rules and expectations in each of her individual relationships.

2.) Non-Verbal Imitation:

• Clapping – she claps, then watches for us to clap – and when we do she thinks it’s hilarious. Sometimes WE can initiate this as well – we clap, then she claps!

3.) Verbal Imitation:

• All of a sudden she is much more willing to try and mimic noises like “ahhh” and “oooo”. She has almost always had to be the one to initiate, it’s pretty cool to see it work the other way around!
• She is babbling constantly, and has come up with some new sounds as of late.
• She continues to use her usual words “yeah”, “yay”, and “go” correctly and in different situations. She even brought me the picture card for “Frozen” during TV time and as she handed it to me she sang “Gooo!” as in the song “Let it Go”
• She also initiated the “I’m gonna get you!” game with me by attempting to say “I’m” and at one point even “I’m get” (video on our Facebook page). Pretty incredible!

Current Challenges:

• Behavioral – lack of patience, pinching, jealousy/general dislike of the pets
• Miscellaneous – new-found issue with clothes. If she finds clothes lying around (like right after they’ve been folded or if they’re set out for the next day), she brings them to us and gets upset. Not sure if she thinks she HAS to put them on if she finds them or what. Change of clothes is definitely closely tied with transitions, so that may be part of the issue.

Lila starts at the special needs pre-K exactly 3 weeks from today. We’re doing what we can to try and prepare her – I created a social story on the iPad using pictures from her actual school and classroom, she’s been watching school-related episodes from her favorite shows, and I’ve been telling her about what is going to happen. I wish we could do more – I know it’s going to be a rough couple of weeks at the start (Janet has fully prepared us). Hoping for as smooth a transition as possible, and excited to see what the rest of the year has in store for all of us!

The best way we’ve found to learn about Lila… is to watch her and do as she does – most times we hear her loud and clear even though she is non-verbal at this point. She just turned three, and here are a few of my favorite games that we currently play– she has created the majority of them herself and taught US how to play:

• Vocal Imitation: She says “ahhh”, then looks at her Daddy and me. We both follow suit and repeat “ahhh” in the same sing-songy tone. Then all three of us are singing “ahhhh” and she just loves it. It cracks her up every single time, and those moments when we are all connected like that and having fun are simply priceless.

• Big Bouncy Ball/Balloons: If she brings us a big bouncy ball or a balloon – she will then inevitably run over to the recliner and get on her back. She wants us to throw the ball/balloon up in the air over and over, then let it fall down on top of her. Then she hands it back to us and the game keeps going.

• Moving Collections: She will gather specific “like” items such as d-ring keychains, balloons, polished rocks, hair twisties, or her colored counting bears and put them all in one central location. So she may move all of the balloons over onto the couch, then she may move them over to a recliner, then into the guest bathroom. Sometimes I either initiate the collecting (ie this photo where I put some counting bears in her tea pot) or I help gather the items she’s missed, show her, then add them to her collection. It makes her so happy when we engage her by following her lead, her eyes always light up – “Hey! You’re like me!” – I love it.

• Let’s MOVE!: She craves both proprioceptive and vestibular input almost constantly. My new name at home is “Secretariat”… due to the ridiculous number of piggy-back rides I give on a daily basis (who needs the gym?!?). If she backs up to you and raises her arms, she wants to be spun around. If you’re on the ground and she tries to straddle your head, she wants a reverse horsey-back ride. I’m so glad we now know what the initiation for these activities looks like – in the old days she would just push us and scream – I love it that she’s getting older and learning new ways to communicate.

• Chasing Game: I give her the typical piggy-back ride, but if Daddy’s home he will growl at her and chase us around the living room – she wants him to catch up to us and tickle her. If we are BOTH home, nine times out of ten this is what she’s trying to get us to play with her.

• Nose!: I think Daddy started this with her in the mornings. She will come up to you and touch your nose, to which in turn we say “Nose!”, then “Mommy’s/Daddy’s Nose!” then we touch her nose and say “Lila’s Nose!”. This typically goes back and forth a few times, and it’s another interaction that always gets her to giggle.

• Dressing Us: She likes to bring us a hat, sunglasses, a purse, or an article of clothing she finds and she wants us to wear it. Then she smiles, looks pretty pleased with herself, and immediately wants a piggy-back ride.

I just wanted to write these down so I don’t forget. She’s constantly evolving these games, dropping some and adding new ones – can’t wait to see what she comes up with next!