CHARGE Syndrome

Sloan’s Little Room (i.e. welcome to our sensory crib: MTV-style)

“Welcome to my crib. Sorry my face is a mess – just taking some shots of formula and didn’t have a chance to clean up. Feel free to take one yourself: getting crunk is part of the vibe around here. Nothing like mylar paper toys, party lights, and a shot of sim total comfort or two.” – Sloan‘s Crib Vibezz

WHADDUP. This post is all-about Sloan’s new (little) party room. We’ll share the inspo behind the design, why it’s beneficial for Sloan, resources on how to make your own, and how this has helped Sloan’s development and growth in recent weeks.

By way of bragfest – we recently had a meeting with Sloan’s early intervention and deafblind team where we discussed Sloan’s 2020 goals, if she met them, and where we go from here. Long story short: Sloan is legendary and surpassed most all of her goals. She truly is a badass. This year we are on to getting Sloan more resources and equipment she needs to get to walkin’, Sloan is beginning literacy education around braille, and we’re continuing to learn her language: tactile sign. Sloan also received another diagnosis during this meeting. We established she not only has CHARGE, but LSS. (Also known as little shit syndrome. Sloan is laughing about that as I type it – pretty rude Sloan. But K.)

As we move through this year, I’ll provide updates on Sloan’s progress with a focus on sharing resources and our learnings with other parents of children with disabilities: specifically DeafBlindness. So today’s post is (hopefully) the first of many to come!

Now join me as we take a tour of Sloan’s crib…

Welcome to Sloan’s crib: MTV-style.

Sloan’s crib is a place to get lit, party, and go on your own little sensory trip.

In this first photo, you’ll notice Sloan’s name in a letter puzzle from her OT at the top of her party room. The room is made of perforated hardboard with PVC pipe holding the walls in place. The perforated hardboard allows Sloan to hang her favorite sensory toys along the wall: motivating her to explore and move around the confined area. The thing about being DeafBlind is that spatial awareness doesn’t come as naturally to seeing and hearing folks, so this little room allows Sloan to party in a room with limits, helping her better navigate the space around her. This tight space brings all of her toys to her so she can stay entertained on her own for a long time in-between sim total comfort shots.

What kind of crib doesn’t have party lights? Ummm…Hi. A Boring crib. Sloan’s crib is lined with party lights and white plexiglass on top, allowing her to navigate her party room with the vision she does have and (now) giving her the chance to practice turning on and off lights with her switch…

Ready to switch gears? (<–Pun intended.) Well, let’s head to the next part of Sloan’s crib…

Sloan uses an adaptive switch to turn on and off the party lights in her crib.

There are all kinds of adaptive devices + switches available depending on your needs, but this one is perfect for Sloan right now. I simply plug her party lights in to the switch box (that white light string plugged in the giant blue box), hook her switch button up to the box, and then she can press the button when she’s ready to party with the lights on.

Sloan has also now learned if she’s tired of controlling the lights and simply wants to party, she’ll flip over the switch so the lights stay on permanently.

For those that are curious, a switch also helps Sloan learn cause-and-effect since she can’t clearly see or hear what’s happening around her. (Although I’m pretty sure she already knows cause-and-effect by how often I’m signing “no” in her hands, but she likes to pretend otherwise.)

Sloan’s crib walls are lined with all kinds of sensory-friendly toys. Sloan likes to keep it weird, so I ordered weird stuff. It’s a bit of Heather Bowring-inspired art, if you will. Here’s the lineup of weird goods lining the walls:


Whirly Squigz

Mylar cat toys

Kabuki face brush

Microfiber dusters

Pop bubble fidget toy

Fisher-Price Taco Tuesday

Mermaid Barbie

Obviously Sloan’s crib is a real party 24/7 vibe. When we party 24/7, it means toys are left around the floor too. While we try to keep it mostly clean for prime exploration and partying, there are a couple toys you’ll always find on the floor of Sloan’s crib:

Pop Tubes

Vibrating Snake (odd name, but alright. We promise this is a PG vibrating snake)

And – most importantly – Sloan’s crib has helped her in big ways that came at a total surprise to mom. Here’s how this party central has helped Sloan:

– Sloan is moving around more, pushing the limits of available space to play.

– Sloan loves to lay on her tummy in her crib, truly gettin’ low.

– Sloan is reaching for the mylar toys and mardi gras beads when lights are on, showing intentional use of vision. Also showing that she loves all things glittery.

– Sloan has fun and entertains herself in here for at least an hour: allowing mom to work from her own crib.

Thanks for joining us on our cribs-style tour of Sloan’s sensory room. It’s undeniable that Sloan’s crib puts Kylie Jenners’ collection of cribs to shame. If you’re curious where this idea stems from, you can find more about Little Rooms here.

Our early intervention and DeafBlind team provided us with the actual room itself, so we were pretty lucky in that sense. (Thank you Barbara and Margaret – we love you!) But if you don’t have access to resources near your home and want to build your own little party room, here is a good resource on how to make one from total scratch…not just purchasing fun random amazon toys like I did.

And, of course, a quick search for “little room sensory” on Google brings up a ton of great stuff. There are also a bunch of awesome resources on Pinterest, too.

Most of all: Sloan and I want to make it clear that you never have to sacrifice cool and style when it comes to adaptive and accessible environments. Sloan and I love style, fashion, and cool-weird-ness.

So, parents: as Sloan’s mom, I know this might not be the playtime and playhouse you envisioned for your kid. Sit in that, allow it to pass, and then don’t let it take your spark or flair away. Your kid will love it, and that’s what matters most. Adapt the shit out of the setup, throw in some style, and make it fun and unique to YOUR kid – fashun and all.

<3 – Kari