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Lillybug & family

@afriendforlillybug

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All about the AMAZING Lillybug!
Co-founded 2 nonprofits - @lillysvoice helps other kids get AAC devices & @mamasofautistickidsevents supports Mamas 🩷

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Whenever I share about my nonspeaking autistic daughter competing as a figure skater, people always ask to see her full program (even though it’s pretty long) ❤️

I actually shared photos and clips from this exact competition a few weeks ago, but her routine got cut off, and this one deserves to be seen from beginning to end!

Lilly has been skating for about three and a half years now, and somehow every time I watch her compete, I’m still amazed by how far she’s come.

She is just SO freaking good!! I often don’t think people truly understand how amazing she is or how hard she has worked for every little thing she does on the ice, because she makes it look so easy!

I know a full skating program is long in Reel-world, but if you have a couple minutes, watch this one all the way through. She’s worth it.

Way to go, Lillybug! I could watch you skate all day ❤️⛸️

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Also worth noting - we didn’t have any friends or family with us that day, all the people in the audience cheering her on were strangers - they stuck around to make her feel special and came up to congratulate her after. I love this community!!
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#autistic #nonspeaking #specialolympics by @afriendforlillybug

For years, Lilly was a pro at using her AAC device to order in public. But lately, we noticed she was starting to pull back. It was clear that the “old way” of communicating in stores and restaurants was causing new stress, and the setup that used to work wasn’t serving her the same way anymore.

Lilly still uses her device in the traditional way at home, for schoolwork, and for many other activities. But in public, she now needs something different. Her need to communicate independently hasn’t changed, however, the way she does it could be much easier.

So I revamped her ordering folders to include “List View” options with large text. Now, she can simply hold her device up for workers to read. It removes the noise, the pressure, and the need to repeat herself, all while keeping her autonomy front and center.

It’s a good reminder that what has always worked may not be what continues to work as our kids grow. We have to be willing to think outside the box and stay flexible - because what they need from us will keep changing.

I never expected we’d be using her device like this, but I am so proud of Lilly for her willingness to keep trying and learning with me. Making this change has been the best thing we could do for her right now. ❤️

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#communication #Autism #AACDevice #Nonspeaking #independence by @afriendforlillybug

I recently added a folder to Lilly’s AAC device called “strong word choices”, which contains some curse words and sarcastic/strong phrases. I know this may not seem like a great idea to everyone —but I assure you, it’s important. Many teens and adults do use strong words and phrases (yes, even curse words). But too often, AAC users are denied the use of those words because no one thinks to add the buttons, no one models how to spell them… or because people simply don’t want AAC users to have access to those words at all.

Here’s the truth:
🔹 AAC users deserve access to all language.
🔹 It’s not our job to censor—our job is to provide access and guidance.
🔹 What words get used, and when, should be their choice.

Communication isn’t just “please” and “thank you.” It’s frustration, humor, sarcasm, and sometimes—strong words. Everyone deserves that right!

▫️Last slide shows a moment when Lilly heard me say a “strong phrase” and repeated me, so I reminded her it was in her new folder, and she found it there too - then we discussed! New phrase unlocked 🤣

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#LovemyLillybug #CutiePie #Autism #Autistic #nonspeaking #apraxia #AAC #Proloquo2Go #communication #AutismAwareness #AutismAcceptance #ProudMama #MyGirl #sarcasm #language #cursewords by @afriendforlillybug

I am so unbelievably proud of Lilly - I don’t think there will ever come a time when I don’t cry watching her at these events! She has worked so hard and has handled so much to get to this point… I am in awe of her strength, her determination, and her talent!

So grateful I get to be her mom and cheer her on during these amazing moments! ⛸️🩷⛸️

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Finally sharing a few moments from Lilly’s amazing 14th birthday trip! She planned it using her AAC device, choosing where she wanted to go and what she wanted to do. This girl was READY!

Then just about everything changed. Long airport waits, shuffled activities, a canceled boat trip, even her favorite restaurant being closed. We prepared her, updated schedules, and talked through each change. She handled so much so well while making sure we knew what she wanted, what she didn’t, and what wasn’t working. We’d also discovered an ear infection just two days before the trip, so she was still in quite a bit of pain!

I’m so proud of her. Changes aren’t easy for her, and I know how much effort all of this took. Watching her adapt, speak up for herself, and still have SO much fun was pretty amazing. She keeps showing me how much she can do, and I loved getting to celebrate her in the place she chose, doing so many things she loves. ❤️

There’s no way to fit all the awesome moments into one post, but here are a few favorites. I’ll share some more in stories too!

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#nonspeaking #autistic #birthday by @afriendforlillybug

Happy 14th Birthday to my favorite person on the planet!❤️

My beautiful, brilliant, funny, sweet, spicy little angel. You are my best friend, my greatest joy, and the very best part of my life. I truly don’t know who I would be without you.

Every morning when you wake up (even when it’s ridiculously early), it feels like Christmas morning to me. I can’t wait to see you, hug you, and tell you how much I love you. Your sweetness melts me, your sass makes me proud, and you make me smile and laugh every single day.

You’ve changed our lives in ways I could never begin to explain, and you’ve touched countless others along the way. Watching you grow, accomplish incredible things, and show the world exactly who you are has been the greatest privilege.

I am so unbelievably grateful that I get to be your mom.

I love you more than anything, Lillybug. Happy birthday, my angel ❤️

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#autistic #nonspeaking #birthday by @afriendforlillybug

I’m sharing this because sometimes it still blows my mind how far she’s come ❤️

And I don’t just mean making her own food. I mean food, period. If you’ve followed us for a while, you know we spent YEARS just working on eating different foods.

Food and aversions are still hard, and we’re always working on trying new things. But when I think about the foods she actually enjoys now compared to where we started? It’s pretty amazing.

And watching her make her own lunch, all by herself, multiple times a week? So freaking awesome.

So proud of this kid and how much she keeps growing!!

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#autistic #nonspeaking #food by @afriendforlillybug

I think there’s a misconception that giving someone an AAC device means they’ll suddenly start communicating like everyone around them - but that’s not really how it works.

The purpose of an AAC device isn’t to teach someone to push the buttons we want them to push, as quickly as we want them to push them. It’s about giving them access to a language system and supporting them as they figure out how they want and need to use it.

And that takes time.

Every AAC user will use their device differently.

They might use it to:
Be silly.
Stim.
Type and spell.
Say one word.
Say BIG sentences.
Say affirmations.
Request. A LOT.
Tell jokes.
Say bad words.
Use phrases and gestalts.
Participate at school.
Engage with strangers.
Plan adventures.
Talk about their special interests.
Learn new words and language.
Process information.
Build independence.

And sometimes they won’t use it at all. AAC use ebbs and flows.

Lilly has been growing and changing alongside her device for years, and she’s taught me that communication doesn’t look one specific way. Her needs change. Her interests change. The way she communicates changes.

The goal was never to make her say what we wanted her to say.

The goal of AAC is access to language and communication.

To express wants, needs, thoughts, feelings, opinions, ideas, humor, interests, questions, frustrations, and everything in between.

To support someone’s individual journey.

To give them a voice that belongs to THEM.

And to give them the tools to SAY ANYTHING.

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Lilly’s “Say Anything” shirt was designed by @the.ap.life just for Lilly’s Voice ❤️

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#autistic #nonspeaking #AACdevice by @afriendforlillybug

I’m so excited to share these photos from Lilly’s latest figure skating competition, along with the video at the end, because I know so many of you love watching her skate! (Unfortunately it seems they limited the length of the video - so I will find another way to share soon!)

I couldn’t be more proud of my amazing girl. She did so many beautiful moves, had an absolute blast out there, and even when she got a little confused a couple of times… she recovered quickly and kept right on going! Every competition, she seems a little more confident, a little more independent, and a little more willing to just enjoy the moment.

Our goal has always been to make sure she’s happy, having fun, and getting to experience incredible things, and this last competition checked every box.

One of my favorite parts of the day was the incredible support from everyone in the stands. We didn’t have family or friends there cheering Lilly on, but you never would’ve known it. We are so grateful for every person who clapped, cheered, and celebrated her. This community is truly something special.

So proud of my girl and so grateful that she has these opportunities to shine! ⛸️❤️

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#Autistic #Nonspeaking #SpecialOlympics

Photos by: @cynthiaslawterphoto by @afriendforlillybug

Whenever I share about my nonspeaking autistic daughter competing as a figure skater, people always ask if they can see her full routine. So here it is, from her latest show!

I know this is way too long for a typical “reel,” but I hope you watch the whole thing anyway, because she is absolutely amazing (and I’m obsessed with her awesomeness)!

When Lilly stepped onto the ice three and a half years ago (in a t-shirt and skirt, mind you), we truly had no idea it would lead to all this.

Now she has competed 14 times, skates in beautiful dresses that aren’t exactly sensory-friendly, no longer requests her headphones, gets her hair styled, and completes most of her routine independently while an audience claps and cheers her on. Every single one of those things is a massive milestone for her, and watching her conquer them leaves me speechless. Proud doesn’t even cover it ⛸️❤️

Way to go, Lillybug!

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#autistic #nonspeaking #specialolympics by @afriendforlillybug

Last week we had an amazing “Girl’s Trip” in San Diego and it was all planned by Lilly! She picked where she wanted to go, helped plan our activities for each day, and even chose most of our restaurants (so we had LOTS of Mexican food). In addition to having fun on the outings, she also did amazingly well hanging at the Airbnb, as well as visiting with some friends while we were in town (will share in stories).

I’m pretty sure that was my favorite San Diego trip ever and I can’t wait to plan another vacation with Lillybug soon! Maybe we will even let her Daddy come with us next time 😂

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#Autistic #Nonspeaking #AACDevice #SanDiego by @afriendforlillybug

Lilly is a pretty incredible communicator. With her AAC device and her voice, she makes requests, comments, says her favorite scripts, and answers questions like a pro. But starting a back-and-forth conversation, or actually asking a question herself, has never really been her style. She’s usually pretty happy just figuring things out on her own (and bossing people around) ❤️

Then yesterday at Sea World, while we were taking a break after a ride, she vocally asked a genuine question, and we had a real, full conversation!!! No prompts. Nothing was modeled. This wasn’t one of her scripts. Just pure, spontaneous communication. I’m so glad I quickly started filming when I saw how hard she was working on getting those thoughts out.

I adore this girl more than words can say - I’m the proudest mom ever! ❤️

(Watch slide 4 to hear it!)

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#Autistic #Nonspeaking #Communication by @afriendforlillybug