A Tale of Two Systems: High Tech & Light Tech

Our oldest daughter Elsa has complex communication needs. In order for her to express her thoughts, feelings and wants, she has to navigate complicated systems that require a lot of work and practice. She’s super smart, so that helps.

But that doesn’t mean it’s easy.

Through babbling, labeling and reiteration, we all come to realize that certain sounds and symbols have meaning and can be linked in endless combinations. Elsa has learned these things, too, but doesn’t have verbal language to convey her ideas.

Instead she has tools. Two of them. And they are oh-so-different.

Her high-tech tool is a talker device called the Accent 1000. Doesn’t that sound like a computer from the future? The language system that she uses on her Accent is CoreScanner and it operates in full blast mode. Each of these small buttons provides an in-road to even more buttons.

So… how does Elsa move through this thing? By gently touching white and orange triangle sensors on her tray, Elsa can move between the colored blocks on the screen. She scans options with the left triangle (the big one), and selects with the right triangle (the small one). Once Elsa picks a block, she cycles yet again - this time through the smaller buttons within each block.

When she selects a word, it goes into a box at the top of the screen. Word-by-word, she builds her sentence. Then, when she’s ready, she hits SPEAK DISPLAY, and her message is articulated in a child’s voice. It’s powerful, specific and exhausting. After about an hour, she needs a break.

Can you tell?

Good thing we have her PODD book, a light-tech tool. PODD (which I featured on the blog in Speaking PODD: 9 Things to Know) stands for Pragmatic Organization Dynamic Display. Pssst! The main character in my debut picture book DANCING WITH DADDY uses PODD, too!

PODD books come in many varieties. Elsa’s current PODD is a thick spiral-bound flip book with tabs that allow her to build messages through collaboration with a smart communication partner. (That’s me, my husband, my daughters, and her speech therapist and school team.)

See that scrunchie on Elsa’s wrist? She’s working on raising that hand when she has something to say. Look, she does! (We’re still fighting some of her hitting behaviors… hence, the arm stabilizers.)

Though we’ve been using PODD for several years, I’ve always wanted to go to the official training. This September, I finally had my chance to attend this in-demand two-day course. PODD expert Linda Burkhart led the class, walking us through the ins and outs of PODD, a system designed by Gayle Porter of the Cerebral Palsy Education Centre in Australia.

One of the most important things about PODD is that the book always needs to be within arm’s reach, so Elsa can gesture toward it or look at it to initiate conversation.

Elsa’s book has 12 frames on each page. Hers is a high-contrast book with black background, to help her focus. Below you’ll find her first page. These squares are called pragmatic branches because they allow her to begin building her message with a clear intention and direction. The numbers on each square let her smart partner know where to flip next.

Naturally, Elsa loves PODD because it’s partner powered and kid directed. She is really social, and PODD requires a communication buddy. Attending the two-day course gave me renewed energy for PODD. If I don’t model speaking on it, how will Elsa know how to get to what she wants to say? It was very convicting. My girl deserves nothing less than full access to full language, at all times.

We used the puzzle activity page in Elsa’s PODD book while playing with our friend Kendall at a recent meet-up with fellow Wolf-Hirschhorn Syndrome families from Illinois and Iowa. We’ve known Kendall since she was a toddler, and Elsa was just a baby, and it’s been incredible to watch her grow and flourish. She is AMAZING and quite the role model for Elsa.

Here’s the full slideshow of our WHS playdate. It’s always wonderful seeing the kids and spending time with folks on this same rare parenting journey. Truly priceless. We are blessed by their friendship and, also, by the amazing tools that help our girl communicate.

Celebrating with Friends at Nora Night

Our calendar is filling by the minute with field trips, parties and special ceremonies, and permission slips and final artwork are spilling from the girls’ folders and backpacks. It’s clear… the end of school is near!

Culmination and celebration are what May is all about, and we were thrilled to share in a very special night last week, as our family attended Nora Night – an evening event commemorating our daughter’s first year as a participant in The Nora Project. Here’s a glimpse into the party!

The Nora Project aims to foster friendships among children of all abilities. (Here’s a post about our first play date.) Since the fall, our eldest (who has Wolf-Hirschhorn Syndrome) has drawn closer in friendship to the student ambassadors at our local elementary school. Through shared stories, games and fun, students have gotten an opportunity to get to know Elsa personally and dynamically.

Nora Night was such a beautiful evening! Students planned every amazing detail. From lovely welcome signage and a red carpet greeting, to activities, creative photo booths, a slideshow and a special song, the students created an atmosphere of love and joy. It was hard for me to see Elsa’s reaction during the event because I was often behind her. This photo warms my heart so much!

To say that The Nora Project has had an impact is an understatement. I vividly remember Elsa’s first trip to the elementary school last year, before The Nora Project began. Elsa was home sick and had to come along for the ride as we dropped off Miss C at kindergarten. There were a lot of stares and dropped jaws when we rolled through the parking lot. They simply didn’t know her… yet.

Now, children come up and say hello to Elsa - all the time. Not only at school, but also at church, at the park, at the grocery store, at the library, and on and on. A number of parents have shared with me that their families talk about The Nora Project around the dinner table. And one of Elsa’s new Nora friends chose to miss the first half of his baseball game to be at Nora Night. The program is making a real difference in our lives and the lives of Elsa’s new friends.

The other day, when I was picking up Miss C from school, I watched as a big kid leaned down to ask: “Hey, is your sister Elsa Schulte?” It was just the cutest and the coolest thing.

Like all parents, I want my daughters to feel special and be seen as special. But I have to be on guard about that. That’s not what kids want. They want to be part of the group. To have friends. To share in the adventures of being a kid. So while I most certainly reveled in my daughter’s moment in the spotlight last week, what I’m really most grateful for is that The Nora Project creates a loving, open place for children to get to know our girl, and for her to get to know them. I can’t wait to see what next year will bring, as these relationships grow and deepen through this initiative.

(PS: A big thanks to Elsa’s grandmas, Zannie and Grammy, for traveling far to be a part of the party! And an enormous thank you to the children who planned Nora Night! You are visionaries, great leaders and great friends!)

Part of the Crew

There’s something so special about a childhood crew. Friends that are so close to you, in every moment of discovery, that they’re essentially family. After school, on the weekends, all summer long - the lives of these friends are intertwined. You’re always just a quick bicycle ride away from the next grand adventure…

I grew up with a go-to group like this. (That’s me above, with the huge pant cuff and giddy shoulder shrug.) Most evenings, we ran around the grade school playground until the streetlights came on. In the summer, the pool was our meeting place. These wonderful people are bonded to me and my sisters in a forever-sort-of-way. So many of our memories were made in their company – playing kickball, playing pretend.

Just playing.

Our girls have been blessed with a similar neighborhood ensemble. The text chain of plan-making is never ending:

Wanna hit the park in 10 mins? Warning, we’re bringing sand toys…

We have zero plans this weekend. Grill and chill Saturday night?

What time are we trick-or-treating?

It warms my heart through-and-through that our family is so warmly embraced by these awesome families and that our daughter with limited mobility is growing up as part of a great group. And I’m also thrilled that more and more often, this same diversity of life experience is being reflected in movies, television and books. 

We are presently obsessed with Julie Andrews’ new Netflix show Julie’s Greenroom. The cast of characters learning about the performing arts includes Hank, a boy who uses a wheelchair for mobility. Hank’s unique life perspective is incorporated so thoughtfully into the show. For instance, when Hank wonders if dancing is something he can do (Episode 105: Barre None), the “Greenies” get a virtual visit from Infinity Dance Theater, a dance troupe comprised of adults with disabilities.

Hank isn’t in the background of the show, but instead gets equal time on screen and has his own textural storyline. His gifts and challenges are celebrated and explored, just like all of the other characters.

Limited mobility and disability are being represented more and more in kidlit, too. New counting picture book TEN CLEVER NINJAS by Sarah Floyd, illustrated by Marcin Bruchnalski (Clear Fork) features a diverse cast of characters, including a boy who uses a wheelchair.

Not only is the boy prominently seen as part of the crew, but he also contributes to the narrative, rolling to the rescue as ninja number eight. There are quite a few picture books in which you can spot a kiddo in a wheelchair. But it’s extra refreshing to see a child with mobility challenges as an active part of the core story, as in Floyd’s book. (PS: I love these illustrations, which have a retro feel that reminds me of books I read as a kid.)

Being accepted and included as part of a crew means so much to all children. I’m very grateful to creators out there who have made representation of disability a priority and are crafting narratives with care, enthusiasm and heart.

TEN CLEVER NINJAS author Sarah Floyd is giving one lucky blog reader a signed copy of her book! Simply comment below to enter to win! (US only) Gotta share that my youngest (age 4) LOVES this book. If you have a new reader, who is also learning to count, it would be a good addition to your home library!

*** Win TEN CLEVER NINJAS ***

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Wolf-Hirschhorn Syndrome Awareness Day 2019

People around the globe recognize April 16 as Wolf-Hirschhorn Syndrome Awareness Day. This rare chromosome disorder is a deletion on the short arm (p-) of the 4th chromosome. In shorthand, it’s often called WHS or “Four P Minus.”

April… the fourth month of the year.

P… the 16th letter of the alphabet.

Wolf-Hirschhorn Syndrome impacts 1 in 50,000. So, yep. Pretty rare. It was a term we had never heard of until our oldest was born. For the first seven days of Elsa’s life, we knew that doctors suspected she had a chromosomal abnormality. They just didn’t know what it was.

On day eight, we heard the diagnosis. I pulled out my old reporter hat and took notes through chest pains and bleary eyes. Focus on the details. Get it right.

Wolf, like the animal?

Yes.

Hirschhorn? Is that all one word?

Yes, it’s hyphenated.

OK. Okay. Breathe.

Collapse.

Into my husband’s arms, into my parents’ arms, into my siblings’ arms, into my savior’s arms.

Wolf-Hirschhorn. Such a precise name. No wiggle room. No ambiguity or uncertainty. What had seemed a vague possibility became final, immovable, permanent. With that phone call, a new, mysterious, question-filled life began for two brand new parents, who didn’t know the first thing about babies, let alone parenting a 4 pound 15 ounce miracle. Every preconceived notion we had about parenthood dissolved.

Meanwhile, ELSA.

Her name became my exhale.

Her life became our everything.

This blue-eyed beauty waltzed right into our two-bedroom condo and filled it with love and FIGHT. Fighting to get food into her body and, with equal vigor, to keep it out. Fighting to hold up her gorgeous face with all the strength her frame could muster. Hardly ever crying, be it needles, surgeries or seizures.

The rawness of these early memories and early years defined how I viewed WHS for a long time. I guess they always will, to a degree. But they were merely the starting point. Today, I can see beyond the next checkup and milestone and into the textures and challenges of our normal family life, which in many ways isn’t so different from the lives of our friends.

One reason we are in a strong place today is because of the support of website wolfhirschhorn.org. This month, I’m updating our Family Location Database, so that folks new to WHS can be introduced to others who live near them and build supportive friendships. It’s one of the greatest services our website provides, and it’s truly an honor to make these introductions.

On WHS Awareness Day, many people wear jeans with a hole in them to signify rare genes and the WHS deletion. Feel free to join us! But also know that by simply reading this, you are helping to raise awareness. THANK YOU.

Spring Break Adventures & Discoveries

This Spring Break has been such a good one! My husband was out of town for work for the first half of it, so the girls and I headed south to my parents’ house. The slides in Moultrie County got a good work out…

As did the crayons…

And the furniture… and poor Alexa, who I’m sure is enjoying her respite from four days as a DJ, tirelessly spinning Pancake Robots and It’s Raining Tacos.

Each day held an adventure or two, be it a movie, swimming at an area pool, visiting family or making crafts with grandma…

One of our favorite trips was a visit to the library in a neighboring town. Their children’s section was fabulous. Lots of great places to read and explore, including a dollhouse-style treehouse, a music phone booth, and a small indoor slide. My favorite? The audiobook listening station.

My eldest has a chromosome disorder called Wolf-Hirschhorn Syndrome, and one of the things that can be challenging for her is focusing and sensory processing. The headphones in this library were amazing. First of all, they stayed on! That alone can be difficult - my gal moves a lot. But they also were soft and snug and kept the sound just where it needed to be.

We snuggled in and read a classic book. It was just what we needed that day, at that moment. If you have a child who needs a little extra sensory input, I really recommend audiobooks and oversized headphones like these. My daughter was in the zone and able to hear the words of the story without interruption. I’m looking into getting a pair for home. And, this sweet chapter book, too…

I hope everyone enjoyed their break, whether it was somewhere distant or exotic, or some quality time unplugging at home. I certainly enjoyed taking the girls to spots from my childhood… and coming home with a suitcase filled with clean laundry. THANKS, MOM xoxo

12 Books to Read with a Communication Button

When I read books aloud to my daughters, the younger two are constantly chiming in. If it’s a book we know well, they’ll gush about their favorite parts and recite the text from memory. If it’s a new book, they’ll ask lots of questions and predict what will happen next.

My oldest daughter, Elsa - who has special needs - is quieter in all circumstances. It’s partially her personality, but it’s also due to her motor and speech delays. She has just as many questions at the tip of her tongue and wants to be part of the unison recitation, too.

For children who are primarily non-verbal, like my Elsa, getting involved in the read aloud can be tough. But there is a way in: A communication button or switch. These devices go by a few different names (BIGmack, Big Talk, etc.), but the colorful augmentative communication tools all function in a similar way. About 8 inches in diameter, they are part microphone - part speaker - part switch.

Recording messages on big buttons is super easy, and so is activating the sound. Some switches say a single message. Others allow you to build longer ongoing messages. You can read an entire book into some buttons, building in page turns. Cool, right?

If you have a child who is non-verbal in your family or school, switches like these can bring everyone into the same experience. And isn’t that what the read aloud is all about? Here are a few simple steps to setting up a switch-assisted story time:

• Read a picture book. (Fun homework, right?)

• Search for a repetition, refrain and reiteration of concepts in the text.

• Record those words into the button.

• Read the story with a friend who uses switches.

• When you come to the point of the story where the recorded text is to be read, STOP!

• Present the button to your friend.

• Give your friend all the time needed to push the button and read the recorded text.

• Try not to re-say what they just said, through the button. (They already said it!)

• Continue through the story, giving as many opportunities for participation as possible.

Repetition in switch reading is really wonderful because it allows friends to get involved… well… repeatedly! With the help of a WONDERFUL early childhood librarian at Geneva Public Library (thank you Natasha!), I gathered up 12 titles that present a wide range of read-aloud experiences. Below you’ll find the list.

Before you dig in… two quick favors!

PLEASE insert your favorite books with repetition, refrain and reiteration in the COMMENTS section below. (There are thousands of books that use repetition, and I’d love to hear about the ones you love most. This is just a start!)

Authors: A small school visit assignment… ASK TO BORROW a switch from the school’s speech therapist. Your heart will do flip flops when you see a child light up at the chance to participate in your story in this exciting way! Now, the list…

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12 Books to Read with a Communication Button

The Important Book by Margaret Wise Brown, Illustrated by Leonard Weisgard (HarperCollins, 1977)

The Button Message: “The important thing about…”

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Hello, Door by Alastair Heim, illustrated by Alisa Coburn (little bee books, 2018)

The Button Message: “Hello…”

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Go Fish! by Tammi Sauer, illustrated by Zoe Waring (HARPER, 2018)

The Button Message: “Go Fish!”

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Llama Llama Red Pajama by Anna Dewdney (VIKING, 2005)

The Button Message: ”Llama Llama red pajama…”

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My Heart Fills With Happiness / Ni Miyawaten Niteh Ohcih by Monique Gray Smith, illustrated by Julie Flett (Orca Book Publishers, 2016)

The Button Message: “My heart fills with happiness when…”

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Let it Shine by Ashley Bryan (Atheneum, 2007)

The Button Messages:

“Let it shine, let it shine, let it shine.”

“Oh, Lord I want to be in that number.”

“He’s got the whole world in His hands.”

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All the World by Liz Garton Scanlon, illustrated by Marla Frazee (Beach Lane Books, 2009)

The Button Message: “All the world…”

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A Big Mooncake for Little Star by Grace Lin (Little, Brown and Company, 2018)

The Button Message: “Little Star didn’t think so.”

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Rap a Tap Tap by Leo & Diane Dillon (The Blue Sky Press, 2002)

The Button Message: “Rap a tap tap - think of that!”

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Just Because by Rebecca Elliott (Lion Hudson, 2010)

The Button Message: “Just because.”

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Marta! Big and Small by Jen Arena, illustrated by Angela Dominguez (Roaring Brook Press, 2016)

The Button Messages:

“Big, very big.” / “Small, very small.”

“Slow, very slow.” / “Fast, very fast.”

“Quiet, very quiet.” / “Loud, very loud.”

“Tasty, very tasty.” / “Clever, very clever.”

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Blue Sky White Stars by Sarvinder Naberhaus, illustrated by Kadir Nelson (Dial Books, 2017)

The Button Messages:

“Red Rows. Red Rows.” / “White Rows. White Rows.”

“Old Glory. Old Glory.” / “Sea Waves. See Waves.”

“Well Worn. Well Worn.” / “Woven Together. Woven Together.”

“All American. All American.” / “Stand Proud. Stand Proud.”

“Rising Up. Rising Up.” / “Fly High. Fly High.”

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In case you forgot - a friendly reminder! Please add your favorite books with repetition in the COMMENTS section below. The longer the list, the greater resource this post can be for parents, educators and therapists. Thanks in advance for your help!

The Superhero Photo Book

I’ve been looking back through old pics this week and stumbled upon this one of Elsa and me. I can’t believe we got to bring this teeny angel home with us! She was just a few days old here…

This was taken a few days before we got Elsa’s diagnosis of Wolf-Hirschhorn Syndrome - an overwhelming bit of information, to say the least. Within a week of the receiving the news, my family started telling me that I needed to check out this great website, which was full of inspiring stories and amazing kids.

In visiting wolfhirschhorn.org, I knew I’d be diving headfirst into the day-to-day lives of other children with WHS. At first, I wasn’t sure I could handle looking down the road… seeing what her life, our lives, might be like in 1 year, 5 years, 10 years.

But after a few weeks, I worked up the courage and went to the site. And it changed my life. Instead of feeling alone on our path, I connected with dozens of other families on the exact same journey. The feeding troubles, the seizures, the heart defects, the developmental delays, the fears, the victories.

It wasn’t long before I started posting about Elsa’s journey on the site, alongside other parents. This probably comes as no surprise to you! Sharing definitely helps me process our journey and allows me to draw others near where we are. Here’s an early post…

When Elsa was age 2, I became more involved in the website, and today, I work alongside a few others to keep the site in motion and run exciting events to support our families.

Once a year, we do a fundraiser that allows us to continue giving away cool prizes to kids with WHS. Recent giveaways have included a supportive outdoor tree swing and an indoor play set, and just last month, we gave away three Amazon Fire HD kids tablets. The tablets went to Washington state, Alaska and Canada! Sending out those special packages was a highlight of my holiday season. Here’s a vid of Elsa and I announcing the winners…

Today, Jan. 11, we launched our latest fundraiser: The Superhero Story Book, which features 36 superheroes with WHS. All photo books ordered by Jan. 25 will arrive before Valentine’s Day… fitting because our kiddos’ superpower is their amazing LOVE! My collaborator Janet pulled the fabulous book together, and I’m helping get it into the hands of our families and their friends. It’s a soft-cover book that sells for $25 (shipping is included in the cost). Here’s an inside spread… (Do you spy Elsa?)

If you’d be interested in having a Superhero Photo Book, or supporting the website’s giving initiatives, you’ll find all the info HERE. Thank you for continuing to follow along and share your words of support and encouragement. We have never felt alone on this journey, which is truly remarkable and one of our lives’ great blessings.

When Small Steps are a Big Deal

In our house, we do our best to celebrate strides big and little. This update is a seemingly small step for the Schulte family, but one that we think may hold the promise of something much, much more.

What's the news? We are seeing the first signs of Elsa's protective instincts with her legs and feet. Translation: When Elsa feels her body leaning forward, she is taking a step to return herself to a place of stability... at long last! Cue the angels... eh-hem, that includes YOU. Every prayer and encouraging word you've sent our way has helped us to keep moving forward. 

Speaking of forward momentum: It's hard to say what the tipping point was with this latest development. But it does seem that a few things have fallen into place recently. In the early months of 2018, we got an Upsee to simulate the walking movement. In the spring, we figured out that a lot of Elsa's self-stimming was the result of a desire to communicate and move. In June, things started clicking for Elsa in the therapy pool (click HERE for the post). Then in July, we spent time using Zero G - awesome technology that supports walking through a track in the ceiling...

Elsa looked good in the Zero G this go round. Really good. So two weeks ago, we decided to try her in a gait trainer. It had been a while...

And, she did incredibly well. The high arm rests (something that we hadn't tried before now) seem to be an essential support for her.

Geneticists told us on Day 8 of Elsa's life that the chances of her walking were 30 percent. It was such a dark day, filled with other grim statistics about the unlikelihood of eating and talking and - worst of all - the probability of a shortened life, in comparison to typical peers.

We've always said, if she walks WONDERFUL. If not, it's OK. And it's still completely OK if she doesn't walk. But we're finally allowing ourselves to believe it's possible. Cuz look at this girl!?

It's pretty precious how invested our younger girls are in Elsa's walking success. Our 5 year old can do what I'm doing in the video above (She still has a few openings in her PT schedule, should anyone be interested...). I've also seen our 3 year old help her baby doll walk, encouraging her with affirmations and love. Heart melting, for sure. 

But the roots of our hope extend SO far beyond our four walls. Your faith and words of support have buoyed us so many times, and continue to... constantly. Thank you for always being in Elsa's corner! 

Elsa's Swim Success

The pool has never been my daughter Elsa's happy place. The glare of the sun, the shock of the cold water, the numerous sunscreen-in-the-eye mishaps… In an environment where most kids find endless fun, Elsa simply hasn't been able to get comfortable. 

Therapy pool classes have always been a positive experience for Elsa. Who wouldn’t love swimming with a one-on-one buddy in a quiet 90 degree pool? But this has never translated into outdoor swimming success... until this year.

In January 2018, Elsa joined a pool group at a nearby rehab hospital with the goal of giving us ways to cope with and enjoy the pool. At the beginning of the class, Elsa was tolerant, but nervous. Her floatation ring, designed to keep her head afloat, was worrisome to her, and she was hesitant to walk across the pool deck.

Fast forward seven months, and things are much different. Much improved. Great even! Elsa's therapist armed us with a series of measures to increase her comfort. Here’s what we tried, and where we are now...

Elsa's Swim Success

1. Socks. Walking across a cold, wet, grainy textured pool deck was really hard for Elsa at first. Her therapist recommended socks, which not only gives her sensory input but also eases some of the sensory challenges of foot-to-deck contact. Now when we enter the pool, we're starting off in a positive, grounded place...

2. Floatation Ring. Elsa wasn't totally comfortable with it at first, but now her floatation ring is a safe accessory for her. (Here's the one we bought for home use.) The ring clasps behind Elsa's head, and a little chin rest keeps her face up and dry. Note: This is NOT the kind of device you can put a child or adult in and float away. It requires constant supervision. But unlike a life vest, with the ring Elsa can float independently. (In this pic, we're experimenting with a little extra buoyancy, using some velcroed pool noodles.) 

3. Puddlejumpers. I never, ever imagined that Elsa would be able to use Puddlejumpers, but once she mastered the floatation ring, the next step was wearing what her sisters wear. Seeing Elsa in a Puddlejumper has enabled me to view her potential in the water in a new sky's-the-limit way. She loves being able to lean back and float. It requires complete hands-on assistance, but she's figuring it out, and loving it.

4. Blowing Bubbles. Safe swimming requires blowing bubbles, to keep water out. To increase Elsa's comfort with putting her face in the water, and giving bubbles a go, her therapist puts a mask in the water and encourages Elsa to look down into it...

Once she felt safe doing that, her therapist worked with her on getting her face down and humming into the water. Now she is blowing bubbles! I'm telling you, I cannot believe it. Is this video not the coolest?

In addition to these things, we also have a half dozen moves that we can do in the pool with Elsa - ways to handle her and swim with her to give her sensory input (jumping, rocking, singing, swaying). So, we're in a great place! We've enjoyed the pool all summer without incident and, truly, with joy. 

A special treat: Click HERE to watch the WHS Summer Slideshow, a video of 25 kiddos with Wolf-Hirschhorn Syndrome enjoying the season (including Elsa). You'll love it!

(PS: The "heart" function of the blog is currently under construction by the Squarespace website platform, in case you try to "like" this post and it won't stick!)

Kidlit Spotlight: Ben's Adventures

Tri-Cities special needs families looking for a great kick off to the summer - this week presents a wonderful opportunity: On Friday, June 8, the Ben Smiles Memorial Foundation and Masterpiece Ministries will host the Abilities Celebration at Chapelstreet Church, 3435 Keslinger Road in Geneva, Ill. 

From 5 to 8 p.m., families will enjoy face painting, balloons, carnival games, bubble fun, a petting zoo, a train ride, workout demonstrations, pizza, vendors and more. (Register asap HERE!) The Abilities Celebration also will host readings from local authors, including Elizabeth Gerlach of St. Charles, Ill., author of this sweet new book...

Elizabeth, founder of the Ben Smiles Memorial Foundation, has had such an exciting spring! BEN'S ADVENTURES: A DAY AT THE BEACH released (via Storybook Genius) in May 2018, and she just returned from the Book Expo in NYC, where she signed books and spread the word about her new title.

Our family is so pleased to know the Gerlachs. Here's us connecting last summer at a lemonade stand for Ben Smiles, the charity that Elizabeth and her husband Rob founded in memory of their son Ben. Ben Smiles puts switch toys in the hands of children with special needs - love the mission! 

Ben, who attended Buddy Break at Chapelstreet Church alongside our Elsa, passed two years ago. Sweet Ben had many of the same motor and speech abilities as Elsa. Elizabeth's new picture book celebrates his life through unique adventures. So naturally, the star of BEN'S ADVENTURES is... Ben!

Right away, we meet Ben and learn that he has Cerebral Palsy and uses a wheelchair. His portal to adventure is his imagination, and in this first book, Ben is dreaming of the beach...

In Ben's imagination, he is out of his chair and in the sand - walking with the crabs, building castles, feeling the waves. The text is so full of joy! Ben also experiences special moments with his dad (flying a kite) and his brother and sister (searching for shells)...

Where will Ben's imagination take him next? We'll have to wait to see! Families who have children (or friends) with abilities similar to Ben's will find the spirit of this book so endearing and the illustrations lovely and full of life.

You can read all about BEN'S ADVENTURES (paperback), and purchase a copy, HERE. A portion of the sales benefits the Ben Smiles Memorial Foundation. Elizabeth - best of luck on a summer filled with events sharing Ben's story - we'll see you Friday evening!