A Scrapbook: Spring + Summer 2022 Celebrations

The time between the end of last school year and the beginning of this one passed in (snap!) an instant. Each authorly opportunity that popped into view led to the next, and before I knew it, we were shopping for school supplies!

What even happened?

I never want to forget these incredible experiences, so I decided to capture them for posterity’s sake! Thanks for flipping through my scrapbook - here goes!

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March + April 2022

This spring, I started a new job as the Parent Programming Coordinator at The Nora Project - I’m so honored and excited to join this rockstar team, to help bring TNP’s mission of promoting disability inclusion to parents, specifically. Around this time, the UK Wolf-Hirschhorn syndrome group invited our family to join their country-wide celebration virtually, which was a blast.

To my complete shock, my picture book Dancing with Daddy (illustrated by Ziyue Chen) was selected for three honors — named a Bank Street Best Children’s Book of the Year, a Christopher Award winner, and an SCBWI Crystal Kite Midwest Finalist. The month also brought several book events, which allowed me to chat with lots of new readers: the Eggstravaganza at Geneva Commons, school visits in Olathe, KS, and the Comicon convention in Kansas City.

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May + June 2022

The month of May started with a real doozy… as I spilt tea INTO MY LAPTOP - who even does that? I thought all of my family photos were lost forever! But on Mother’s Day, no joke, the team at uBreakiFix saved my life and restored all that I thought I’d never see again. I shall never yoga, webinar and clean cat kibble at the same time, ever again. Lesson learned!

May included virtual and in-person school visits and a story time + dance party at the Geneva Public Library. Hokey pokey, anyone? Batavia boutique Wonder & Wander hosted a Father’s Day weekend read aloud. Then, picture book friends from across Chicagoland came to Geneva for our second-annual Kids Day Story Time during Swedish Days. Thank you Lisa, Jacob, Jennifer, Alison (my crit partner!) and Sarah for being there, and Mayor Burns for emceeing. Books, books and more books!

With the help of my colleagues at The Nora Project, I wrote a blog post called How we talk about disability, which takes a look at commonly used phrases that can cause harm. It kind of blew up! We have been so encouraged by the response and interaction with the post. Please take a look, and share! My TNP colleague Jo Tolley and I co-hosted an Instagram LIVE on the topic (watch it HERE), which was such a thought-provoking chat.

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July + August 2022

Things kept on rollin’ in July and August! I visited three Chicago Public Library branches in one day, including the stunning Harold Washington Library Center and Thomas Hughes Children’s Library. Wowza. The Nora Project’s annual training camp at the Chicago Botanic Garden was unforgettable - great instruction for TNP teachers and soooo many wonderful speakers.

A foundation that supports children with GRIN2B syndrome and their families invited me to speak at the org’s national meeting in Rosemont. I was so excited about the opportunity that I locked my keys in my van. For the second time this summer. Yikes. And yet…

Despite my frenetic shuffling, summer was 100 percent awesome and concluded with a celebratory wrap. The Nora Project’s gala at Steak 48 was a tremendous success. It was such an honor to meet emcee Kevin Kling. His remarks were FIRE. I had the opportunity to interview outdoor adventurer and accessibility ambassador Enock Glidden for The Nora Project on Instagram LIVE (watch it HERE), which was way too much fun. And my Christopher Award medallion, an honor I share with Ziyue, arrived on the same day I recorded a podcast for the Christopher’s radio show. Phew!!

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Now, the kids are back in school, and all is well - and I’m charting a course for the months ahead.

Spoiler alert: Fun stuff is happening!

Things on deck include a book festival, an author panel, library visits, Holiday Book Drive Chi year six, a new book deal announcement (eeps!!!)… and the cover reveal of my second picture book, Willow and Bunny, illustrated gorgeously by Christopher Denise. I can’t wait to share it all with you!

**PS: If you’d like me to visit your school or library to talk about writing, dancing, disability and inclusion, please let me know! Just drop me a note through my Contact form, to start the conversation.

Talk soon!

Miss E's 2021 Halloween Costume Pick

I can’t believe I’m even typing this, but… we’re kind of on the ball this year with Halloween! Now that the girls are back in school full-time, I’m channeling my inner Marvel Black Widow, attacking my to do list with swift roundhouses and lethal jabs… and that includes costumes. Getting stuff done never felt so good!

Yep, our girls’ trick-or-treating ensembles are coming together, with new components arriving on the stoop almost every day. Miss L wanted to be “a grandma,” complete with little gold glasses and a white wig, to match her friend across the street, who will be “a grandpa.” Miss L has been bringing her cane prop to the dinner table and on car rides and even tucked it under the covers with her last night. She looks more like Little Bo Peep than a Golden Girl, but she’s in deep method mode, and I’m not going to be the one to break her concentration.

Miss C will be Violet Baudelaire from Lemony Snicket’s "A Series of Unfortunate Events,” in all her big sis Victorian Goth glory, garb and charm. I actually would like an adult-sized version of her entire costume, from the Peter Pan collared floral A-line dress to her cozy fuzzy cardigan. Even the black wig with bangs is pretty stinking cute.

And what about Miss E? What does she want to be? We sat down to peruse our options…

I’ve enjoyed sharing her single-elimination costume tournament in the past and thought you might like to join us again this year! It also gives me a chance to share how Miss E uses alternative communication and images to make choices, which is fun!

First, I modeled the activity in her PODD book:

• I have something to say

• Let’s do something

• It’s happening now

• Clothes

• Your, Clothes

• Categories, Special Events

• Special Events, Turn the Page

• Halloween

Then it was time to survey the options!

We’ve had great success with Target’s costumes in the past. Their pictures are so vivid and clear on the screen, which makes it easy for me to create boom-card style screen grabs. So this year, we went straight for the red bullseye. (PS, I’m super excited to share that Target is carrying my debut book DANCING WITH DADDY, for pre-order! That’s worthy of a Halloween shriek - Eeeek!)

Well, I can tell you this. After checking out the options, Miss E was not interested in any of the princesses. The past two years were much the same, as she chose more whimsical and book-based characters, such as Pinkalicious and Cindy Lou Who. She weighs in on her 2021 choices in this vid…

So what made the line up this year? Unfortunately that cute Monster costume she liked wasn’t in her size. So Miss E picked an alternate, resulting in these six spunky favorites:

Group A: The Grim Reaper, Dalmation Girl, and Gogo Dancer…

Group B: Bat Girl, Mermaid, and Werewolf

Then, from those six, she narrowed her choices to two:

Dalmation Girl and Mermaid

What did Miss E choose?

You might notice that both of her finalists are found in beloved stories, again! (101 Dalmations and The Little Mermaid, respectively.)

She ultimately dove into this shiny, swishy ensemble…

Luckily the weather stayed nice for a while - we didn’t have to bundle until the sun went down. She gripped a Twix bar most of the night - which was really exciting, because sustained grasp is something that we’ve been working on for a long time! That’ll be the first thing we taste, after trick-or-treating.

Hope you had a Happy Halloween and enjoyed seeing all costumes! So much work, right? But so stinking cute.

An Interview with The Picturebooking Podcast

Talking picture books is pretty much my favorite thing, so it was an utter delight to sit down with one of my very favorite podcasters to talk about DANCING WITH DADDY, illustrated by Ziyue Chen, which comes out on Dec. 1 (Two Lions).

A huge thank you to Nick Patton for having me on The Picturebooking Podcast, which has interviewed all-time kidlit greats, such as Marla Frazee, Sophie Blackall, Grace Lin and Dan Santat, and many, many more.

Nick and I chatted about EVERYTHING, from my childhood young author’s club and journalism years, to Wolf-Hirschhorn Syndrome and writing craft. Here’s the link to the episode!

I hope you enjoy the interview - thank you for listening!

Be sure to check out Nick’s other amazing Picturebooking interviews HERE! And a little reminder that DANCING WITH DADDY is available for pre-order now! You can message independent bookstore Harvey’s Tales in Geneva, IL, and request a signed copy HERE. Or you can order one HERE, as well.

THANK YOU, as ever and always!

Very First Story Time!

Last week brought a super exciting event! My dear friend Jaimie Valentini, founder of the Chicagoland non-profit Rising Lights Project, hosted an inclusive playdate at Happy Hooves Therapeutic Farm, and our crew got to be a part of the fun. Families gathered in the stables and all over the Happy Hooves grounds to meet goats, chickens, pigs, bunnies and horses…

… including this pretty one, Elsie.

Wait, Elsie?

Yes, ELSIE! The name of the main character in my debut picture book DANCING WITH DADDY, illustrated by Ziyue Chen (new pub date, Dec. 1, 2021). This day at Happy Hooves marked my very first story time, ever! To see an Elsie, right before I read about my Elsie, felt like more than a coincidence.

When Jaimie and Rising Lights Project invited me to read DANCING WITH DADDY at its inclusive playdate, I couldn’t say yes fast enough! DANCING WITH DADDY is inspired by my family. The main character, Elsie, has Wolf-Hirschhorn syndrome, just like my oldest daughter.

I’m always excited to be a part of events that support disability awareness and foster friendship (such as The Nora Project - read about it here!). This playdate was exactly these things. Jaimie introduced me, sharing a bit about my upcoming books (including WILLOW & BUNNY, illustrated by Christopher Denise), plus my favorite color, favorite animal and love of musicals.

A huge thanks to my sister Betsy and best friends Heather, Chaz and Kate for snapping pictures of the day! I chatted about the cover and revealed the special alternate cover UNDER the jacket - one of my favorite surprises in the book. Then I read DANCING WITH DADDY from this sweet rocking chair. I couldn’t believe that seat was for me! (Am I a real author now?)

The story time audience included disabled children, who use the very tools that Elsie uses in DANCING WITH DADDY, including a wheelchair, alternative and augmentative communication, feeding tubes and syringes. I hope with all my heart that these young readers and their parents were able to see themselves in the story and its characters.

One of the scenes in DANCING WITH DADDY includes a G-tube feed. So after I finished reading the story, I demonstrated how a G-tube extension and syringe connect and deliver food directly into the stomach. Whenever my daughter is eating in public, her G-tube feeds always catch the attention of children, who are curious to know what we are doing and how it works. It was SO nice to talk about this important part of our family life in such a positive, welcoming atmosphere, among new friends. (You’ll notice my girls aren’t watching - they’ve seen this about a million times, LOL!)

Speaking of my girls (who inspired the characters Elsie, Rosalie and Daphne in DANCING WITH DADDY), they were the VERY best audience and coaches as I prepared for the read aloud and toyed with a few interactive elements. As the Beach Boys say, God only knows what I’d be without you, girlies!

Also in the crowd were the Jarvises! Miss E and Miss L are classmates. But more than that, the Jarvises are family. We walk the Wolf-Hirschhorn syndrome journey together in near-lockstep.

Hillary also happens to be my fitness instructor via her amazing online Hillary J HIIT workouts. Check her out here! Her Patreon platform got me through quarantine, without a doubt. And now she’s up for the cover of MUSCLE & FITNESS HERS. Yes, Hillary is amazing! Vote for her HERE - if Hillary wins Ms. Muscle & Fitness, she’s buying a new wheelchair accessible van for her family!

The event with Rising Lights Project is the first of three live-and-in-person read alouds I’ll be a part of this month - yay! So if you didn’t make this one at Happy Hooves, and would like a sneak peak at DANCING WITH DADDY (which publishes Dec. 1), please come to the one at Swedish Days Kids Day in Geneva, IL!

From 10 a.m. to 12:30 p.m., on Friday, June 25, right outside of the Geneva Public Library, nine regional authors will read their picture books and meet young readers. Don’t miss it! Creators attending include Jacob Grant, Norene Paulson, Sarah Aronson, Lori Degman, Sara Shacter, Ruth Spiro, Patricia Toht and Kira Bigwood… and me! (I hyperlinked everyone’s name to their website, so you can check out their work.) I’m so excited to see these incredible children’s book makers in real life again. If you live in the area, please come out and say hello!

If you haven’t had a chance to pre-order DANCING WITH DADDY, you can message independent bookstore Harvey’s Tales in Geneva, IL, and request a signed copy HERE. Or you can order one HERE, as well. Your support has completely blown me away. Thank you!

Happy summer - catch you back here soon!

Cover Reveal Day! DANCING WITH DADDY

What a day this day is… so much to celebrate!

First, today, April 16, is Wolf-Hirschhorn Syndrome Day (or 4p- Day). Wolf-Hirschhorn Syndrome impacts individuals who have a deletion on the short arm of the fourth chromosome. Why is April 16 WHS Day?

April is the 4th month of the year (fourth chromosome). And “p” (the letter representing the short arm of the chromosome) is the 16th letter of the alphabet.

So… 4/16!

Visit www.wolfhirschhorn.org and www.4p-supportgroup.org for more information. Sending hugs and hellos to all people and families touched by WHS. Our family wears jeans today in honor of rare genes. You can too!

As many of you know, I recently wrote a picture book about a girl who has WHS - a character inspired by my daughter, who has this same chromosomal deletion, which impacts 1 in 50,000 births. The book, DANCING WITH DADDY, publishes on Oct. 26, 2021. And today, I get to share the cover of it with you!

Here it is!

To my delight, librarian and writer John Schu revealed the cover of DANCING WITH DADDY this morning on his blog, Watch. Connect. Read. Mr. Schu, who also is Ambassador of School Libraries for Scholastic, interviewed myself and phenomenal illustrator of Ziyue Chen. Here is Mr. Schu’s fantastic feature - DANCING WITH DADDY BY ANITRA ROWE SCHULTE AND ZIYUE CHEN! Answering these questions was entirely too much fun…

As you will read in the interview, I wrote DANCING WITH DADDY because there was a book that I desperately wanted to see on the bookshelf at my local library and in my local book store - a fiction tale featuring a main character who, like my daughter, uses a PODD communication book, a wheelchair, and a G-tube for eating, and has a fun, loving family life and her own exciting dream-come-true adventure. The story came together in my mind and heart as we were preparing for the night that my husband, Dan, took our three girls to the local father-daughter dance. This was the night!

That dance was three years ago, and our girls are much bigger now! But the magic of that night has been captured in our memories and now, in a picture book, too! Ziyue Chen’s art is so very beautiful. I can’t wait for you to see it in full color! And it won’t be long…

DANCING WITH DADDY is now available for pre-order, woohoo! Click HERE to order, and your copy will arrive on the day that the book is released, in Fall 2021!

October 26 (the book birthday of DANCING WITH DADDY) will be here soon - on that day, my heart just may burst. I’ll be sure to share more fun as it comes along the way. What a dream come true this all has been. Many thanks to my editor at Two Lions, Kelsey Skea, literary agent, Stephanie Hansen, and amazing critique partners Rosie, Jen, Kristen, Barb, Alison, Hannah, Lauren, Clo, Tom, Heather, Chaz, Kate, and to the uber talented members of my debut group, PB Debut Troupe 21!

Happy Friday, and Happy WHS Day!

Miss E's 2020 Halloween Costume Pick

Halloween is just a few weeks away. Though we are not exactly sure what that evening will bring, we decided at the very least, the girls will be eating candy (in one way, shape or form) and dressing up. So we secured ourselves some festive apparel.

My younger two are still deep in Disney’s Descendants, so their costumes took about 30 seconds to procure. Miss C will be Evie, and Miss L will be Uma. They really wanted my oldest, Miss E, to join their VK partay.

But what did Miss E want? We needed to know!

Like last year, we used laptop screen grabs to find out. I sat next to Miss E and navigated to about 20 costume possibilities. We looked at characters from her favorite books, shows and movies, and also reviewed Target’s impressive array of costumes for children who use wheelchairs. Miss E expressed interest in six dress-up options.

Mermaid, Black Widow, and Fancy Nancy…

… and Mal, Cindy Lou Who, and Alice!

From each grouping of three, Miss E chose her favorite, narrowing it to two:

Black Widow and Cindy Lou Who

So what did Miss E choose?

Martial arts maven?

Or sweet holiday who?

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And if you’re up for a little blog hop… I recently posted a family update on the Wolf-Hirschhorn Syndrome support group website. Here’s the link to the post, if you’d like to check it out. Happy fall to all!

The Birthday Party: The ups and downs of an invitation to celebration

We recently had an exciting development at the Schulte house. My oldest daughter, age 8, received her very first birthday party invitation! It popped up in her backpack by surprise. A present in and of itself.

We’ve attended many birthday parties as a family, and Miss E (who has Wolf-Hirschhorn Syndrome) has always been a welcomed guest. We are blessed to have the most amazing friends - more than a family could ever hope for. These folks embrace us exactly as we are. And each of their invitations has mattered. Immeasurably.

But without a doubt, this invitation was different. It came addressed to my girl only. And it came from a school friend I’d never met.

Out of love, and out of necessity, my daughter and I do almost everything together - therapy, appointments, activities, errands, you name it. I know virtually everyone she comes into contact with in a given day. So, this invitation was more than a gesture of friendship. It was a symbol of Miss E’s independence.

From the day the invitation arrived, I had to remind myself that this party was not about me. Even though I’ve wanted this for Miss E for as long as I can remember, this was her invitation. I needed to stay in the background.

I tried, I really did.

The first mom overreach came when we went to pick out the gift. I found myself wanting to get something big, something equal in value to the gift that the birthday girl’s family had given us - the opportunity to experience a childhood right of passage. But that was silly and desperate, frankly. Anything more than a $15 or $20 gift would’ve been weird. We settled on an adorable stuffy. Kinda big. SUPER cute.

The second mom snafu came on the day of the party. I was so focused on the gift in the front seat of the van that I left Elsa’s PODD book at home. Her words, for crying out loud. A U-turn on our town’s busiest thoroughfare brought us back to our door, so I could snag it.

We would have been among the first to arrive, but now we were the last. (Three strikes for mom.) Nevertheless, when we arrived, the birthday girl’s mom was there to greet us and make sure we found the party room. When we wheeled into the space, she directed us to a spot reserved for Miss E’s wheelchair, already set up with crayons and coloring sheets.

SO nice. SO thoughtful.

I should pause to say: When kindness is sent in my direction, it’s a delight. But when it’s directed at my girl, I can’t quite handle it. Any gesture of generosity and heart that shows real care and planning can knock me off balance. It’s so touching that it almost hurts. Cue mom tears. The uncontrollable variety.

Perhaps you can see where this is going…

As we listened to music and colored in the party room, I resisted the urge to chat up the other second-grade girls and boys about The Descendants, L.O.L.s, and Girl and Boy Scout life. (Even though this is for sure my wheelhouse.) Good thing I kept my mouth shut, because all of the kids were pretty immersed in their coloring and not talking much. Blend in, momma. Easy does it.

Miss E used her PODD to choose the hues for her coloring sheet, and we chilled and had a super time. Right before we went into the movie, we hit the bathroom. It was a completely normal stop, in that it was time consuming and took us four times longer than everyone else. When we finally got back to the lobby, the rest of the party guests were posed for a picture, patiently waiting for Miss E to join in.

Ugh, here we go.

I took Miss E out of her wheelchair and sat her in with the other kids. (I could have had her walk over, but everyone seemed like they’d been sitting a while, and I wanted to speed things along.) I set her down on the ground, said a quick prayer, and walked back over where the other parents were standing. They started taking pics. The first few photos went OK. But then Miss E started hitting herself. Hard. A behavior we rarely see anymore.

Time stood still for a moment as I looked at the group of kids, in its entirety. All were united in making silly faces, while my girl was whaling on herself, in complete distress.

Maybe I pushed it. Maybe we shouldn’t have come. Maybe this thing, this simple birthday thing - this thing that other kids do every month of their lives - can’t be for us.

Just as quickly as I had swooped Miss E into the picture, now I was swooping her out. Disrupting the picture process. Knowing that 20 sets of eyes were on us as I tried unsuccessfully to stay cool and calm Miss E down. The next five minutes were kind of a blur. The kids and chaperones must have started filtering into the movie theater at that point. I’m pretty sure someone asked if we were OK. I vaguely remember saying, “Yep, we’ll be in in just a minute.” My head was tucked in so tight, trying to keep everyone from seeing my mom tears. My you’ll-never-know-this-hurt mom tears. Tears meant for shut doors and rooms of one.

I pulled myself together, to about the 40 percent mark, and headed into the theater, only to find that the birthday hosts had reserved special seats just for us, with special signs. The kindness of these beautiful people. Lord, have mercy. My control dwindled to about 20 percent at that point. Start the previews someone, please...

I tell you what, I’ve ever been so happy to see Jim Carrey in all my life. I laughed my face off in that movie (SONIC THE HEDGEHOG), and I swear his comedy saved me and saved this day. By the time the film was over, I was composed again. This time, when someone asked me if I needed help carrying things (I was juggling Miss E’s AFOs, which I had to remove during the movie, as well as her syringe and her food thermos), I could say “no” with composure, like the proud fool I am.

Then we returned to the party room for presents. The kids were so excited to see the birthday girl open her gifts that they were almost in her lap. Totally adorable. As Miss E waited patiently for her present to be opened, we talked about what was happening, using the “Special Events” page in her PODD book.

At last, it was time to open the gift from Miss E. The birthday girl LOVED it. Like completely beaming, grinning, dimples-out loooooved it. It made Miss E so happy that she started smiling and giggling, for the first time that day. Then, two other party guests, who know my girl from school (Miss E joins the typical second-grade class for library, music and special events) came over to say hello.

Just like that, the event was a huge success!

As we were leaving, the birthday girl’s dad said something incredibly kind to me. When you have a child with complex needs, you know you’re being seen. You can’t avoid the eyes. But his comment made me feel seen as a mom, and that elicits a different kind of mom tear altogether. The strong, brave, happy kind.

I’ve never felt like such a delicate flower as I did on this day. Holy moly. In the end, trying to make the day NOT about me sure proved to be quite the opposite. But we did it. And, for Miss E, I’m so glad we did.

Brand New Look in 20/20

Miss E recently had her annual ophthalmology appointment. Things were pretty routine until the last few minutes, when we learned that our just-turned-8-year-old girl is officially near sighted. Her ophthalmologist told us back in 2018 that we might eventually be having the glasses conversation. And here we were.

Dr. R demonstrated what Miss E’s vision is like up close, and then at a distance. Wow. No wonder she’s been frustrated when watching TV and sitting in church. Total blur. I’ve never worn glasses, so when I experienced what she’s NOT been seeing, it was clear.

Glasses. STAT.

But could we keep them on? Sunglasses have always caused us trouble. Dr. R said that kids of all motor abilities can tolerate glasses well because clear vision is just that great an incentive. So with Miss E’s fresh-off-the-printer prescription in hand, we went shopping.

Many children with Wolf-Hirschhorn Syndrome have a small head and face, so infant frames were a must. That made our first stop fruitless. Only standard-sized kid frames there. Luckily, the second stop had a few to choose from… and the nicest tech on the planet. Big bonus.

It was really exciting! I mean, Miss E was getting a brand new look. What style would she like? Would she want colored frames? Or, wait. Maybe we should manage our expectations. There might only be one pair that stays put... One by one, we gave them a go. It was all a bit like Goldie Locks and the Framed Squares.

The first pair: Too… colonial?

The second pair: Too big.

The third pair: Waaaay too small.

Goodness. Were we getting any closer to a good fit? Her sisters were pretty busy playing hide-and-go-seek and trying on different looks, so not a lot of help there….

A pink and a purple pair sat untouched in the tech’s box of options. I crossed my fingers and toes. Miss E’s favorite color use to be purple, and as of late, it’s pink. (You may recall she chose Pinkalicious as her Halloween costume this past year.)

The tech reached for the rosy hued pair. We put them on and Miss E gave them a discerning look…

The fit was great!

What do you think? I asked Miss E.

With her PODD book, she told me to turn the page, then pointed right to…

BEAUTIFUL.

Score! Not only did we have frames… we had frames that she loved. They won’t be in for another week or so, but until then, this smile is a reminder that my birthday girl’s feelings about her new look for 2020 are completely clear.

Choosing a Halloween Costume with AAC

Picking what to be for Halloween can be really hard. There are so many options! And once you finally choose, and the costume has been bought or made, you’re pretty committed.

But how do you choose a costume when you have complex communication needs?

For the past few years, Miss E has picked hers out of a field of two. This is how she chooses what to wear for school each day, as well. I present two clothing options. If Miss E chooses one of them - by looking or touching - that is her selection. If she seems unimpressed, I bring out two more choices.

Last year, from options found in our dress-up bins, she selected Cinderella…

Using this approach for everyday outfits works, for the most part, because I know that Miss E is choosing something that she at least reasonably likes (and her wardrobe isn’t extensive). But when it comes to Halloween, there are hundreds of things Miss E might want to be. The more I got to thinking about that this fall, a few hand-me-down choices from the basement bin wasn’t really fair.

So we tried something new…

On Columbus Day, when the girls were off of school, Miss E chose her costume using AAC, or Augmentative and Alternative Communication, a term used to describe various methods of communication that can help people who are unable to use verbal speech to communicate. October is International AAC Awareness Month.

We spent the morning on Pinterest, looking for that JUST RIGHT costume. I spoke as I searched. “What about Frozen? The Descendants? Miraculous?” If Miss E perked up at the mention of a movie, show or character - by waving her arms or leaning in - I pulled up an image of the costume on my laptop, making the picture as big and vibrant as possible.

Whenever Miss E said she liked a costume idea, my middle daughter, Miss C, wrote it down on our small white board…

When we reached a total of SIX good possibilities, Miss E’s costume selection went NCAA tourney-style! We showed Miss E the first grouping of three. After pointing to and naming each idea, we asked her to choose a favorite from that group…

Then we showed her the next field of three…

You’ll notice one of Target’s new amazing adaptive Halloween costumes in the grouping above. Miss E really did like the chair-turned-carriage idea! But ultimately, it was down to Pinkalicious and Anna… What did she choose?

Drumroll please…

PINKALICIOUS!

Happy Halloween, everyone! (Even in the face of snow, here in Chicagoland!)

Kidlit Spotlight: Roll with It

We go to the library once or twice a week. On the kidlit shelves, we always see lots of animals and kids looking back at us. Very rarely, though, have we picked up a book with a girl on the cover who reminds us of my oldest daughter. I can count the instances on one hand… and still have two fingers to spare.

Then a new middle grade novel arrived on our stoop. On its cover? A spunky girl in a cute yellow hoodie, sitting in a chair that looks just like my daughter’s chair. Even the aqua blue of Miss E’s backpack matches the book’s bright blue background.

ROLL WITH IT by Jamie Sumner (Atheneum Books for Young Readers) has been sitting on our living room end table ever sense. Partly because I love this story. But also because I just love seeing it there - smiling at me, looking so adventurous and confident. Representation is such a powerful thing.

And I’m just a parent. Not just, but… what I mean is… this book wasn’t written for me. Yet it gives me such pride to see it on my table and know the story that lives inside. So, how must people who do use a wheelchair feel to see themselves on this cover and in this book?

ROLL WITH IT was released exactly one week ago, and it’s already on its third printing. Holy smokes, that’s quite a reception - and for good reason. Not only does this story meet a tremendous need, but it does so with incredible style, humor and heart. Here’s that cover I’ve been going on about…

ROLL WITH IT is the story of Ellie, a witty, bright, headstrong girl with cerebral palsy. She also is quite an accomplished baker - icing on the cake of this already awesome character. Ellie has a lot on her parchment paper, so to speak. Her father is more-or-less out of the picture. Her loving mom is often stressed and strained. Her grandfather’s health is deteriorating. And, early in the story, we learn that Ellie is about to start all over - in a new school, in a new town.

There are tiramisu-level layers to this story. Where to begin? Grab a fork, and we’ll dig into the elements that struck me most and connected so strongly to my family’s life.

Seeking Independence

Ellie is an independent girl, who wants real autonomy and freedom. But in so many moments throughout her day, she just can’t get it. She wants to transition between classes alone, but her mom thinks she needs supervision. She wants privacy in the bathroom, but her safety requires assistance. Ellie puts it this way…

When you’re like me, you get used to seeing your body as a separate thing. Leg one. Leg two. Muscles and hair and a heart that beats. It makes it all a little less embarrassing when people are always putting their hands on you.

The detail in Ellie’s most frustrating moments rang so true to me, particularly her restroom issues. My daughter and I spend hours in the bathroom each day, and even more time when we’re on the road, traveling or vacationing. When we’re making due in tiny gas station bathrooms, I can’t help but think about how easy the same act is for others. ROLL WITH IT captures this anger and resignation vividly.

Connecting through Cooking

Ellie loves baking and frequently writes letters to food writers at publications, such as Food & Wine and the New York Times, to get to the bottom of a preparation conundrum. The letters she pens reveal her baking acumen and attention to detail. But they also demonstrate her desire to solve family problems and bring people together through the magic of flour, butter and sugar. In one letter to an editor, she writes…

I wouldn’t bother you with this under normal circumstances, but I am hoping to be a professional baker one day, sir, and so I’d really like to get this right. Also, my family could really use a pick-me-up and I’m trying to find the perfect thing.

When an opportunity arises for Ellie to enter a pie baking contest in her new town, she is all in. Baking is, after all, a huge part of her identity. It gives her a chance to “make something from nothing.” As a mom of a child with complex needs, I want to make sure I’m giving Miss E opportunities to explore her passions. On a recent school questionnaire, my daughter told me she wants to be a musician when she grows up. ROLL WITH IT has encouraged me to investigate more avenues for my girl to explore her love of music.

Navigating Hurt

Though Ellie is distanced from her father, and keeps a low profile at school, she has a great inner circle. The most constant bond is the one she shares with her mom, which plays out in snappy, playful, sometimes cheeky banter. Ellie also has amazing grandparents. (It’s easy to see where Ellie gets her trademark sass and charm.) But those relationships can’t protect her from the hurtful words and perceptions of others at school. One day, a girl makes fun of Ellie’s fruit pouch at lunch. It’s simply heartbreaking…

I shove my entire lunch back into the bag. I wish I could crawl in too. How do I explain that those squeeze pouches were the only fruits and vegetables that I could eat for a long time? “Easy calories,” Mom says. I can’t help it that I still like them. I must look like such a baby.

If only Ellie could explain to this student… surely she would understand. But so often we just don’t get the chance to say our piece. My daughter often has her favorite toy, a musical light-up jungle, on her lap. When we're out and about, sometimes little kids ask why such a big girl has a “baby toy.” I wish I could say it doesn’t bother me, but labeling things as babyish is so demeaning. I hope ROLL WITH IT encourages readers to slow down and think about the impact of their words.

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I tend to wade longest in a story’s deep moments, to fully feel and empathize. So I probably disproportionately emphasized the heavier moments of this story. So I have to also loudly shout that THIS BOOK IS SUPER FUNNY!

Sumner can do it all. She balances emotional heft with light, clever humor. She sets scenes with sensory detail and immersive, creative metaphors. In quick-paced, conversational prose, she keeps the plot moving ever-forward, but with such control. And the voice… Ellie’s thoughts and words play, then rebound and then resound, full of ALL the things. Sarcasm and anger and worry and joy and love and HOPE.

Like the very best desserts, ROLL WITH IT isn’t overly sweet. It’s undisputedly a little bit salty. And it leaves you satisfied, delighted and asking for seconds. Lucky for us, Sumner has more literary goodies coming. Congratulations to Jamie on this incredible debut. (See below for your chance at a signed copy!)

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Jamie Sumner, author of ROLL WITH IT, is also the author of two more middle-grade novels, which will release with Atheneum Books for Young Readers in 2020 and 2021. Sumner is the author of the non-fiction book on motherhood UNBOUND and the forthcoming book, KEEP ON, SUPERHERO, for parents of children with special needs. She is the mother of a son with cerebral palsy and writes and speaks about disability in literature.

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One lucky reader will win ROLL WITH IT, signed by Jamie Sumner! Here's how to enter:

*** Win ROLL WITH IT ***

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