We just got the official news that our summer camp for kids with trachs was cancelled this year. With all the closings due to COVID-19, it’s no surprise, but it’s absolutely gut wrenching for the campers and the volunteers who go each year. Especially for the campers. Last summer, as we packed up to leave, the little boy I drove up from Savannah asked me what day it was. I told him it was Friday. He promptly replied, “Then I want to come back Saturday.” He meant the very next day. Camp is a world of its own. It’s an escape from reality.
I’ve been reflecting a good bit this past week about camp. About what it means for kids with special needs, whose daily lives are filled with treatments, procedures and medications. Kids who are often singled out and maybe even bullied at school because of their differences.
This reflection led me to remember a hectic day last summer. We’d just gotten our group of campers into the cafeteria for lunch, when two of mine said they needed to use the restroom. One of them uttered those dreaded words, “I don’t know if I can hold it.” SO, we set off at top speed for the bathrooms. The two campers in my care had just shimmied through a row of other campers seated at long tables, when a little guy I didn’t know from a different special needs camp jumped up and stood between me and my little guys.
Before I could say a word about needing to catch up to my charges, he said (in such a serious tone of voice it was almost alarming), “I’m in that house too.”
He stared at me. Expectant. Waiting. I had no clue what he was talking about for a good 10 seconds (as I’m hoping we won’t completely miss lunch because we have to walk back to our cabin and changes clothes before the next activity). Then it hit me. I was wearing a T shirt with a printed Gryffindor logo on it. Luckily, I recovered fairly quickly, considering. “Oh, yeah,” I said. “I’m a Gryffindor through and through.” His face. It just lit up completely. We’d connected. Not through that physical place, as magical as it is. But through a world built by J.K. Rowling.
This is why I’m passionate about writing books for kids. They can’t always escape physically to a place where their problems feel miles away. But, hopefully they can always pick up a book and escape to a world built by an author. In these days of isolation, we need this more than ever! We need to build connections with people we might not get a chance to see in person like we used to. We need to see someone across a crowded room, and stop them to say, “I’m in that house too.”
With the help of Kickstarter and some amazing collaborators, I was able to raise the funds I needed to bring Jeremiah Justice Saves the Day into the world. Local Savannah artist Rashad Doucet agreed to illustrate the book, and his work is amazing! Every page has movement and action. I think kids are truly going to love this book.
I wanted to take the chance to share some of Rashad’s illustrations. Enjoy! More news will be coming soon regarding the date the book will be available to purchase. Thanks to everyone who has helped make this dream come true. I hope we can break some barriers and show that special needs kids can most definitely be superheroes.
Two years ago, I began writing a picture book about a special needs superhero named Jeremiah. He’s a regular kid with a regular family–until he discovers his superpower.
This isn’t an “issue book” to teach kids to be compassionate. It’s a fun, exciting and humorous story about an amazing kid who taps into a hidden strength. What the world might see as a weakness (the trach tube in his neck) becomes the source of his superpower. He names his power The Super Tornado Blaster and practices using it until he learns to control it. There are a few mishaps, of course. But eventually he is able to stop a notorious super villain’s crime spree in his town.
When I finished the manuscript over a year ago, I wrote a blog post about it. Since then, I’ve shared my story with writers, editors and illustrators at conferences. The response has always been positive. Enthusiastic even. But then it comes back to the world of publishing. It’s a business, you see. And books only sell enough copies to be profitable if they appeal to the widest possible audience. This kind of book is considered a “niche” book. Considering the amount of interest it’s already received, I’m hoping it’s much more than that. I dream of this book being read to school kids, by parents and grandparents, and even some kids who want to read it over and over to themselves. I envision the book being given to kids attending special needs camps in the summer, to families with a new trach patient, and to kids who are fans of superhero stories in general.
April 1st, my Kickstarter Campaign launches. It will run for 30 days, and my project goal is set high enough to cover the costs of publishing the book with the help of a professional illustrator. If you’d like to see a book in the world featuring a medically fragile child brave enough to take on a super villain, please support the campaign. It will take the help of everyone I know to share the word about this project. Thanks in advance!
Update: Check out this great early concept character of Jeremiah Justice by talented artist and SCAD professor Rashad Doucet!
I know I’m not the only one who’s hurting over recent events in our nation. I’m certainly not the only person praying for our country to figure out a way to come together and stop allowing differences of opinion to lead to a loss of civility. One of the best things about America is our diversity, and yet we’ve become increasingly divided.
I wish I had some answers. I wish I could fix things that aren’t working. I wish I had a way to level the playing field and give all kids opportunities. One thing anyone who knows me can tell you is that I love kids. Working with kids is all I’ve ever wanted to do, and all I’ve done as a career and as a volunteer in my community. Some days at work, my precious little patient “J” takes my hand. He doesn’t say anything, but he holds onto to my hand. It melts my heart into a puddle and I yearn make this world a better place for him. I don’t think I’ve ever felt such sadness for my country.
Even though I don’t have the answers, I’m encouraged that my community is having a service of unity this evening. Maybe, just maybe, if all communities around the country begin listening to each other and addressing issues we can start to see changes. Little changes, when multiplied around the country, can become big changes. I look forward to doing whatever I can do locally to make this community a welcoming place of opportunity and acceptance for anyone who lives here.
I recently read an article that gave valuable insight into why life for a person with high functioning autism (frequently still called Asperger’s Syndrome) is so challenging. It’s one of the best I’ve read to help us “neurotypical” people empathize with those on the spectrum. If you know a single person on the autism spectrum, please take a moment to read this (click hyperlink above). I forwarded it to several people that I especially wanted to read it, and I hope they did. If we can change the lens we view people with ASD through, our interactions with them can become more positive, and hopefully there will be less misconceptions on our part for their actions.
Let’s be honest. Sometimes, it’s easy to get frustrated with someone who gets upset by so many things that “shouldn’t” bother him. We think, It’s not that loud, it’s not that bright, I can’t even hear anything. It’s tempting to want to say, “Just do it.” Whatever “it” happens to be at the moment. Go there. Do that. Say this. But what me, and anyone else that loves a person on the spectrum, sometimes forget is how much tenacity, sheer will, and courage it takes to just get through a plain old day. Like so much of autism spectrum disorders, this tenacity is invisible. The world doesn’t see it, because the world doesn’t see what it takes for someone on the spectrum to cope with his or her challenges in the first place.
If you’ve read my previous blog post What I’ve Learned in the Asperger’s Trenches, you’ll know I have a son who was diagnosed with Asperger’s in preschool. He’s almost 21 now, and even though it’s been a long and sometimes painful journey to get to this point, we still celebrate the milestones he reaches–even though some days each tiny step forward is followed by a big leap backwards. Life is tougher for him that I wish it was. But I wanted to write a post acknowledging exactly what it’s taken for him to get to where he is today.
I chose the word tenacity for the title of this blog because it represents one of my son’s character traits that has been a part of his personality for as long as I can remember. He actually has many of the same personality traits as terriers: intelligence, loyalty, bravery, and especially tenacity–an absolute unwillingness to give up on something he’s set his mind to do. But it’s the trait of tenacity that’s helped him persevere through the worst times.
This trait showed up at an early age in my son. His preschool teacher observed that he was very rule oriented and thrived on structure. She used this to set goals for him, and by God he was going to make that goal no matter what. It continued on into Boy Scouts. He joined a troop when we moved back to Georgia (from Germany) that had some boys who ostracized him, at one point even informing him that he couldn’t stay in their patrol. I’ll admit, I suggested he find another troop, but my son wasn’t having it. He called the scout master and asked if the other scouts could decide who stayed in patrols. When he heard the answer was no, he said, “Good. I’m staying in my patrol then.” He wasn’t going to let anyone keep him from his goal of becoming an Eagle Scout. Which he accomplished beautifully.
When he started playing the saxophone, he was in one of the lowest “chairs” in his middle school band. This didn’t seem to bother him until the kid next to him started annoying him throughout the entire class. I made a comment that if he moved up to a higher chair, he wouldn’t sit next to that kid anymore. Once my son latched on to that concept, he started practicing the saxophone like his life depended on it. By the end of the year, he wasn’t only in the top chair he was awarded the Outstanding Woodwind Player in his band at the final concert. In high school he was nominated for the Governor’s Honors Program for music.
When he started looking at colleges, his first choice was Georgia Tech in Atlanta. Known for extremely competitive acceptance rates and challenging course work, it was nevertheless where he set his sights on going. Not only did he get accepted, he was accepted “early action” which affirmed his decision to go there in the first place. But it hasn’t been easy, to say the least. At Georgia Tech, sheer tenacity has kept him hanging on through some of the most challenging years of his life. When he mentioned the possibility of transferring to a less rigorous school, my husband and I fully supported his decision to do so. But ultimately, he has stuck it out at Tech and will be a senior in August when the Fall semester begins. Seeing him walk across that stage to receive his diploma will be an absolutely overwhelming moment of emotions for me, representing a culmination of years of overcoming obstacles.
If you are a parent of a child on the spectrum, I’d love to hear from you. We’re definitely all in this together. My best advice is to take each day at a time. Don’t look ahead too far into the future, but celebrate the small successes of today. I’d love to celebrate your child with you and cheer for him or her to reach every single goal.
I have always loved characters that surprise me. Especially if that character is a child that no one expects to do great things. This character is found in all of my favorite books by Roald Dahl–unloved, orphaned, tiny, impoverished–whatever the reason, the world at large has low expectations for the character. And then, our scrappy little kid goes on to prove the world was completely mistaken and we learn that he/she is truly amazing.
In my recently completed picture book manuscript, my main character is certainly not the kid anyone would expect to be a superhero capable of stopping a notorious super villain in his tracks. But that is exactly what he does. My character was born with a disability that required him to have a tracheostomy tube placed in his neck to help him breathe. But don’t count him out just yet. He’s packing a hidden punch.
As a pediatric nurse, I’ve been awed and inspired countless times by the enormity of courage packed into tiny little bodies. Kids are my passion, and writing stories that show their powers (in ways the world doesn’t expect) is more fun than should be legal. I hope that one day this story will make it out into the world and you can share in the fun of watching my tiny little guy with the huge heart take down the bad guys. Until then, Google some videos of Baby Groot in action for a guaranteed smile!
I finished reading Wonder in March, but I can’t stop thinking about this book. I’ve recommended it to more people than I can keep track of. The ones who’ve read it get back to me and thank me for recommending it. The book is just that good. This book resonated with me for several reasons. First, I grew up in a family with a sister who had special needs. I also have a son with special needs. I’m a pediatric nurse who’s cared for children with the same kind of anomalies that the main character was born with. Finally, I taught elementary school for 4 years and high school for 1, and Ms. Palacio nails school dynamics beautifully.
If you haven’t read this wonderful book yet, here is a brief introduction: August Pullman has never been able to attend school due to his extensive medical needs. He was born with severe craniofacial anomalies, and has had many surgeries. At the opening of the story, his parents have decided to enroll him in a private school. Auggie is nervous about how the other kids are going to respond to him. The principal picks three kids that he thinks will help ease the transition for Auggie, but it doesn’t work out so well. (It’s more complicated than that, but I don’t want to give spoilers!) However, there is another student named Summer who befriends Auggie without prompting from anyone. Through the narrative, the reader becomes a part of the Pullman family as well as their extended family and friends.
The story unfolds through multiple perspectives. Even though Auggie is an extremely observant kid, there is no way he could know the motivations and back story for every other character in the book. Palacio beautifully puts us inside the head of each character, and this is one of the reasons this book has such a huge heart. No one is a cliché, but a fully developed character with motivations guiding their behaviors.
The book is written with humor. Even though I cried in many places, this book is not in the least bit depressing. The Pullman family relies on humor to get them through the tough times. I came to love this family so much. They made mistakes and they didn’t always agree. But they loved each other and it comes across so beautifully in the writing.
The beautiful writing itself makes the book a pleasure to read. In the very beginning of the book, Auggie tells us, “the only reason I’m not ordinary is that no one else sees me that way.” He is perceptive and notices the way others react to him. He also shares at one point that if he had a magic lamp, he’d wish for an ordinary face. Being inside of Auggie’s head doesn’t feel like a pity party. But the frustration he feels that even his own family doesn’t seem to be able to allow him to be “normal” comes across beautifully. It’s gut wrenching, but at the same time it’s hopeful.
Via’s experiences were the ones that resonated the strongest for me because this teenage character is able to put her family’s existence into words better than I’ve ever been able to. When it’s Via’s turn to tell the story, she compares her family to a solar system. “August is the Sun. Me and Mom and Dad are planets orbiting the Sun. The rest of our family and friends are asteroids and comets floating around the planets orbiting the Sun.” Wow.
Another beautiful part of Wonder that was especially meaningful for me was the relationship between Via and her grandmother. In her early years, having her grandmother’s unconditional love and adoration helped to offset the dynamics of her nuclear family. My grandmother was exactly this for me. And just like Via, she died unexpectedly when I needed her support the most. Via’s grandmother shares a secret with her about why she feels the way she does. “I love Auggie very, very much,…but he has many angels looking out for him already, Via. And I want you to know that you have me looking out for you.”
This book is “real” in every since. Palacio doesn’t sugar coat anything. She allows Auggie to be resentful of “normal” kids at times. Via feels betrayed by her mom at times when she focuses so much attention on Auggie and his needs. The parents have arguments. Some kids are just plain mean, because let’s be honest, some kids just are. Perhaps the best part of the authenticity of Wonder is that is shows how acts of kindness that might seem small at the time, can have an enormous impact on someone who needed the kindness. In fact, this book started the Choose Kind movement through American schools.
To say that I recommend this book is an understatement. If you haven’t read it, you can go here for more information from the book’s publisher. If you have read it, please share your comments. I’d love to hear from you.
I was fortunate enough to attend my first Dragon Con last weekend in Atlanta with my family. This was the 30th anniversary of the pop culture, fantasy, and sci-fi convention, and I was joined by more than 77,000 others on this adventure. According the the post- convention press release, “Fans came from around the world and all 50 states, with this year’s convention attracting people from as far away as Japan, New Zealand, and Fiji.” In other words, I was in good company.
What I knew about Dragon Con is that people engaged in cosplay–dressing up as their favorite characters from movies, comics, television programs, video games, and just about anything that reflects their interests. I knew this because I’ve assisted my young adult kids in making these costumes and/or purchasing items to make them look authentic. I vaguely knew that they held panels for people interested in writing because my daughter, who volunteered this year in media relations at the con, had told me about them last year.
What I didn’t know about Dragon Con could fill Lake Michigan. Here’s just a few facts that I found impressive.
The con has it own awards/recognition program called Dragon Awards. These recognize the creators of science fiction and fantasy in books, comic books, games and filmed entertainment.
The con raises money for charity. According to the press release, $98,000 was raised this year for its 2016 official charity, the Atlanta Center for Self Sufficiency, which helps put homeless individuals on a pathway to achieving a healthy independence.
The con attracts famous actors, writers, producers, etc. There was some serious talent in that place. There are far too many to name, but a few of the individuals that I’ve watched in television during my lifetime were in attendance such as Alex Kingston, William Shatner, Gillian Anderson, and Jason Isaacs and Adam Baldwin. There was a pool of talent at the con that would appeal to people of all ages and interests.
The sheer size of the con! I mentioned the numbers above, but nothing would prepare you for how many individuals (costumed or not) were crowded into a huge area of Atlanta. Event organizers added more than 215,000 square feet to the venues, including the AmericasMart Building 2. The con consumed meeting space in the Sheraton, Marriott Marquis, Westin, Hyatt and the AmericasMart buildings.
The con is quite civic minded. In addition to the fundraising efforts, there was a blood drive held in which over 6,000 units of blood and blood products were donated to an Atlanta blood bank. Also, disability services were visible everywhere and provided assistance to individuals with special mobility/seating needs.
The diversity of the people attracted by Dragon Con was one of my biggest surprises. There were people there who were less than half my age as well as people (almost!) twice my age. There were people there of every race, gender and socioeconomic level. Some costumes were Captain America shirts from Walmart and some looked professionally made to the cost of thousands. The attendees for the most part were gracious with posing for pictures, and seemingly unflustered by the long (and I mean long!) lines, wait times and sheer crowds you had to part to just move anywhere. I loved seeing families there with their kids, all in costume having a great time.
I’m saving the best for last. 🙂 I was stunned at the writing community that was in attendance. There were some terrific panels at the con on the writing craft as well as specific elements of publishing. Brandon Sanderson, who is probably best known for finishing Robert Jordan’s epic fantasy series, The Wheel of Time, was on a panel that I attended. I ran into him outside of one of the hotels and he was warm and gracious in answering a question and then chatting for several minutes. The authors who attended seemed very willing to interact and share insights with attendees. I was impressed with the breadth of options of panels to attend that focused on writing.
My takeaway from Dragon Con 2016 is that there is truly something for everyone there. If you’ve ever read or watched anything related to science fiction or fantasy, if you’ve ever watched superhero movies or read comics, if you enjoy art or especially if you like people watching–this is the place to be during Labor Day weekend in Atlanta.
Have you been to Dragon Con or think you might be interested? If so, I’d love to hear your comments! For more information on Dragon Con 2017, please visit the website www.dragoncon.org for more information. You can also follow them on Facebook and Twitter.
As an author, a mom to a special needs son and a pediatric nurse, I am always on the lookout for books portray a realistic representation of the American demographic. We are not all “the same” and that is one of our country’s greatest strengths. One underrepresented group of kids that I’m particularly sensitive to are kids with ‘disabilities’ that make them look or act different from other kids. Here are some picture books for very young children that can begin to introduce characters with special needs in a positive light.
Keeping Up With Roo by Sharlee Glenn
I will admit that this book hits close to home. My older sister Mary Beth was always so excited to be an aunt. But each of her nieces and nephews, as they grew older, came to realize that she was different than other adults. This is what happens to the main character Gracie in this story when she starts school. When Gracie brings her friend Sarah home from school, she feels embarrassed about Roo’s behavior. Like all children who have a family member who is “different”, Gracie has to comes to to terms with her aunt’s differences and realize what is really important in life.
Susan Laughs by Jean Willis
I love the fact that this picture book focuses on all of the things the main character Susan does that are exactly like every other kid in the world. It isn’t until the very last page of the book that the reader will discover that Susan is in a wheelchair. I took care of a beautiful, smart and sassy little girl who uses a wheelchair and I see her on every page. I highly recommend this book to parents of preschoolers. When you reach the end of the book, the illustration of Susan in her wheelchair provides the perfect teachable moment to discuss all of the similarities Susan has with your own child.
3. My Brother Sammy Is Special by Becky Edwards
I love the way this book explores the complex sibling relationship that occurs when one of the sibling’s has special needs. Generally that sibling is parented differently, with a different set of rules and expectations. The author allows Sammy’s brother to express his resentment and frustration, but ultimately focuses on his love and concern for his brother. This book would be the perfect gift for any child with a special needs sibling.
4. Just Because by Rebecca Elliott
What I love most about this book is that the younger brother Toby is too young to understand exactly why his big sister Clemmie can’t do the things that other kids can–but he doesn’t need to. In his innocent and accepting heart, he just loves her like she is. The author depicts the positive things these siblings can do together, even if it isn’t what most siblings can do. The writing is beautiful and the illustrations are enchanting. Children with siblings like Clemmie are going to be faced with many challenges as time goes on, but this book’s purpose isn’t to tackle the hard stuff. It’s to focus on the love and affection that is at the heart of the sibling relationship. And it does it beautifully.
5. A Friend Like Simon by Kate Gaynor
This book doesn’t focus on the sibling relationship, but on the struggles kids on the autism spectrum have making friends at school. I love this book. I see so much of my own son in the character of Simon. This story is told from the perspective of a kid who is trying to be Simon’s friend at school. But it isn’t always easy. It takes more time and effort to get to know kids who are on the spectrum, but this book shows that it can often be well worth the effort. As a mom of a “Simon” myself, I appreciate the kids who make the effort.
6. The Invisible Boy by Trudy Ludwig
For any parent of a quiet child that’s felt left out of the “popular group” at school, this book is a true find. The illustrations by Patrice Barton add to the impact of the words because Brian (the invisible boy) starts out gray and becomes more colorful as he begins to see himself as fitting in with someone–anyone. This book truly shows that it only takes ONE kind child to reach out to an “invisible kid” and make them feel a part of a class. Parents, I urge you to teach your children to be this one child. There are “Brians” out there in every classroom. I’ve taught elementary school, and I’ve witnessed the change one child can make.
This list is certainly not inclusive of all the excellent books out there. However, these 5 titles resonated with me in a special way. If you have other books to recommend, please comment and let me know about them. I’d love to hear from you!
**Please note that I am not the copyright holder for any of these books, and am using the cover images to aid in readers locating the books at their local stores or libraries.
My sister was older than me, so there’s never been a time in my life when she hasn’t been there. Until this past week. I’ve had plenty of time to reflect on her life and I want to take a minute to share some insights about what it’s like to live with a disability that makes you feel marginalized and even invisible.
Mary Beth was born in 1964 two months ahead of schedule. There were no neonatal intensive care units back then, so they just tried to keep her warm. She survived, but it was obvious by the time she started school that she had residual effects of her premature birth. Over the years I have watched her be cheated, robbed, beaten and worse. Thankfully most people in the world aren’t completely horrible and wouldn’t dream of doing things like that to a person with a disability. But there are plenty of decent people out there who just “didn’t see her.” And those are the people who can truly make a difference in the life of someone like Mary Beth.
On this day of her memorial service, I want to ask you for a favor. When you come across a person like my sister, take an extra moment to talk to her. Ask her about her hobbies. Ask her what TV shows she watches or books she reads. Ask her what kind of music she likes to listen to. And when she answers, just listen. Lately I’ve been replaying my last encounters with my sister and grading myself on how much effort I put into including her in conversations. And I don’t always score very highly. I’ve been wondering what it would feel like to sit there and listen to people talk about their careers, travel, kids, and other adventures when you don’t have those things. I’m so thankful for those people who invested their time and energy into her life.
On thing we can likely all agree on is that the world needs more kindness these days. This is one easy way to start spreading it around to those who need it the most.
Mary Beth, you were loved by so many people. You will be missed!