A Tiny Superhero with a Huge Heart

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Baby Groot from Guardians of the Galaxy 2 (Marvel) takes down a much bigger bad guy! Copyright Walt Disney Motion Picture Studios. 

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 and save his school from a robber. But that is exactly what he does. My character was born with a disability that required him to have a special 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!

What I Love about R.J. Palacio’s “Wonder”

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Penguin Random House Books

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.”
  6. 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.

 

 

Dragon Con 2016

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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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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. 14317415_1242873745744756_2617542351912526429_n
  7. 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. 14195279_1059995960781223_8651517751153972000_o

     

    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.

 

Photo Credits: Sarah Maney

 

Picture Books that Get The Big Picture

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.

  1. Keeping Up With Roo by Sharlee GlennRoo cover

    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.

     

  2.  Susan Laughs by Jean Willis

    I love the fact that this picture book focuses on all of the things the main character images (1)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
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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

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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 Gaynor51OijiofOVL._SX402_BO1,204,203,200_

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

51j3FlqSA9LFor 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. 

 

The Rest of the Story

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A few weeks ago, our pastor asked me to share a story or memory about my sister during her memorial service. I managed to pull myself together enough to share a story that took place at my grandfather’s funeral many years earlier. I’ve had people ask me about it, and share with me how much they enjoyed the story. So, in the words of Paul Harvey (who happened to be one of my grandfather’s favorites) here is “the rest of the story”.

September 12, 1981 was the day my childhood abruptly ended. It began as an almost idyllic Autumn Saturday. My mom had taken us to Stone Mountain Park for the Yellow Daisy Festival, and we had spent the morning browsing through rows of handmade crafts and funnel cakes.

When we got back to the house, my mom dropped us off the swim while she went grocery shopping. I was thirteen years old that day, but by the time the sun went down I felt about sixty. The sibling dynamic in my family had always been skewed because my older sister had been born two months early, leaving her with disabilities. I functioned as the oldest sibling, even though it was never acknowledged formally. On this fateful day, my sister Mary Beth had decided to stay inside while my younger brother and I swam. After about thirty minutes of enjoying our typical pool antics—cannon balls from the side, diving for rings, contests for holding one’s breath underwater, etc.—my sister appeared at the back door looking as if she’d seen a ghost.

“Some lady just called,” she announced in an unrecognizable tone, “and said that she’d ‘heard in passing’ that Grandpa died.” She looked as if she’d seen a ghost.

I swam to the side of the pool. “Grandpa Callaway?”

She swallowed hard, still pale and shell-shocked. “No. She said it was Grandpa Walter.” But this simply couldn’t be possible. My grandpa was a doctor who still saw patients every day. He was full of life. I’d spend the weekend before with them in the mountains and he’d been perfectly fine.

I was out of the pool and to the door within seconds. I didn’t even bother to completely dry off before rushing to the phone hanging on the wall of the kitchen. I punched in the numbers to my grandparent’s rambling old farmhouse in the mountains from memory. As the phone rang, I tried to think of a reason for calling. I surely couldn’t explain to Grandpa the real reason for my call.  But he didn’t answer the phone that day and neither did my grandmother. At that moment, I just knew. The woman on the phone had been right. With my mom gone, I had to become the adult and hold things together until she got home and could find out what had happened. Once you take on the role of adult, there’s no going back to the innocence of childhood. I discovered this on that day.

The funeral was held at the church my grandparents had attended for years-a white frame building constructed in the early 1900s. It was traditional in every sense of the word. The day of the funeral, the place was packed. People stood along the sides and the back of the sanctuary, and people even stretched out the doors into the churchyard. After all, Doc Walter had treated most everyone in the valley at one time or another, having been the only doctor around for miles. People came out in droves to pay their last respects to the Doc.

My sister, Mary Beth, taped her favorite television programs years before anyone had ever thought to make VCRs. Armed with a Kmart cassette tape recorder, my sister would record an hour long program—the first half on side one of the cassette tape, and the rest of the show on side two. Of course, this meant you couldn’t talk, cough, or clear your throat during the entire program without suffering her withering stare and flapping hands to silence you. But come hell or high water, those shows were going to be taped. Mary Beth also traveled everywhere with her trusty tape recorder. So it was no surprise to anyone who knew her that she had it clutched in her arms when we walked into the church for the funeral.

Mary Beth had decided that we needed to record the funeral-partly because my grandmother was too distraught to attend. This task was delegated to my father—a man who has the biggest heart and the best of intentions, but doesn’t handle stress all that well. He scurried around through the packed room and placed the Kmart recorder on the top of the organ. He asked the organist, who was rather elderly, if she would please be kind enough to push the “record” button and the “play” button down when the service began. She nodded her agreement as she pounded out the hymns that the family had requested be played.

Everything seemed to be going according to plan until the organist reached up and hit the “play” button only—just as the family had been seated. Mary Beth had placed the cassette in the recorder on the “B” side, which contained the second half of a Little House on the Prairie episode that she’d previously recorded. She must have really wanted to have a recording of Grandpa’s funeral pretty badly if she was willing to tape over that show—it was her absolute favorite.

When the blood curdling screaming started , no one else in the church knew what was happening. They simply looked around the church, bewildered by the terrified sounding young girl’s voice screaming, “Pa, help me! Help me Pa, I’m blind. I can’t see!”

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Photo credit NBC

But we knew! We knew the minute we heard the voice of Melissa Sue Anderson, who portrayed Mary Ingalls on the popular show—the organist had hit only play rather than both record and play simultaneously.

Try to imagine a quiet, simple, mountain funeral suddenly and most unexpectedly, filled with the loud screams of a panicked young woman. You could see people mouthing the word, “Pa”—attempting in vain to discover who this “Pa” person was. Surprised and startled looks spurred my mother to jab Dad in the ribs, and he promptly pushed and shoved his way as gently as possible through the people obstructing his path to the organ.

As unobtrusively as possible, he pushed the “off” button on the tape recorder and weaved his way back to the front row of the church—only to find his oldest daughter hyperventilating and flapping her hands wildly, and his wife fixing him with her penetrating gaze.

“You turned it off,” my mother informed Dad. “Now it isn’t recording the funeral at all.”

The look on his face was a mixture of bewilderment, incredulity and hostility. I could literally see the gears of his mind churning in circles as he realized that Mom expected him to find a way back through the throng of mourners to turn the recorder back on—the correct way this time, in order to spare any further outbursts from Mary Ingalls. But he got up and did just that. And now you know the rest of the story.

Saying Goodbye to My Sister

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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!

Please don’t think discrimination doesn’t exist just because you don’t see it

In many ways, getting older is about as appealing as extensive dental work without Novocaine. However, there is one aspect of approaching fifty that I’m grateful for, and that is the increased realization that my view of the world is largely limited to my own experiences. I see the world through my personal lenses, and the world reacts to me by what it sees: forty-something, middle class, educated, white, etc. How do I change the narrow way in which I view the world? It’s actually pretty simple, and yet so many people refuse to do it. Just listen to the people who face discrimination every single day and allow yourself a glimpse into their lives. Why is this so hard for people? Because when we aren’t the object of discrimination, it’s easy not to see it as a problem. The knee-jerk reaction is to either get defensive, or else just deny the existence of the issue entirely.

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Old Navy (Photo from Twitter)

This morning, The Today Show had a segment on a Tweet from Old Navy that featured a beautiful family. Apparently there are some outraged Twitter users who are refusing to go into Old Navy stores again because they chose to feature this couple. I was honestly surprised that this image would cause any kind of uproar. But it illustrates the point that I made above. My husband and I are from the same racial background. I’m sure if we weren’t, or if one of our young adult children decided to marry someone of a different race, we would all be acutely aware of the fact that people living among us in 2016 still react this strongly to the issue on interracial marriage. Even though it still saddens me (because I just can’t understand how this family is hurting anyone in any way), at least seeing this blurb on TV educates me to what interracial families deal with.

Our son has Asperger’s, which causes him to feel set apart from society in many ways. Imagine him at the age of twelve (as if middle school isn’t hard enough) being told by his church pastor that he couldn’t participate in the confirmation class being offered because she thought, “he wasn’t ready.” There was another middle school aged child in the class, but he wasn’t allowed. We pleaded with the church pastor on two separate occasions to allow him to be a part of the class, explaining how excluded he felt. But this woman, with all of her lofty ideals about inclusion, didn’t see any problem. To her it was evidently completely acceptable to exclude him. As a parent, this was heartbreaking and we no longer attend this church. But until the world makes an effort to understand what it is like not to process sensory information normally, to be unable to determine a person’s meaning from a facial expression or their body language, this type of discrimination will keep going on.

Also within the past week, I read a blog by a mom whose son is in a wheelchair. It was heartbreaking to think of her little boy stuck in his chair watching the other kids run and play. Even though I’m a pediatric nurse and I’ve taken care of children in wheelchairs, I had never put myself in the position of one of these precious children or their parents. I found a blog with images of a playground in Australia that has the great swing featured in the image below. My favorite part was a sign mounted at the entrance that said, “Access for All.” Whether we have a child in our lives with this need or not, we should all be aware of the problem and support these types of play areas. One amazing little girl I’ve taken care of in the past was excluded from almost every preschool in the area because her “disability” made her a liability. Until she is old enough to enter the public school system, her parents are at the mercy of private programs and how far they will stretch themselves to give her a place to participate in a school environment.

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Sir James Mitchell Park in Perth, Australia

I’ll apologize in advance if this blog sounded preachy. It isn’t meant to be. But, I’d love to see everyone make a conscious effort to view life through the lens of others who are different than us. We’ve all heard that expression about walking a mile in someone else’s moccasins. It’s taken from a poem by Mary T. Lathrap. I’ll end this post with her words in the opening lines.

Pray, don’t find fault with the man that limps,
Or stumbles along the road.
Unless you have worn the moccasins he wears,
Or stumbled beneath the same load.

What I’ve learned in the Asperger’s Trenches

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This is a bit off topic for my blog, but as an author it is impossible to separate my own life experiences from future book projects. When I read books such as Jodi Picoult’s House Rules, I want to say, “You’ve gotten so much of it right, but it isn’t exactly right.” No one can possibly imagine what it is like for a mother to watch her child struggle through life feeling acutely “different” from everyone else. So perhaps one day I will write a novel featuring a character with Asperger’s Syndrome, or maybe it will always just hit too close to home for me to do it. But I thought I would blog about it and see where it goes.

A few years ago, I would never have attempted to give anyone else advice on how to raise a child with Asperger’s. Even now, I would never claim to have all the answers. More importantly, every child is unique; what worked well for my child might not for another child. However, I’ve been at this long enough now to have gleaned some knowledge that could help other parents out there.

I have an 18 year old son who was diagnosed with Asperger’s Syndrome at age 4. The early diagnosis in itself has been a great blessing to us because he began receiving services at a very young age. He overcomes challenges every day, and I feel so honored to be his mom. He is currently a freshman at Georgia Tech in Atlanta and is attempting to navigate life in a crowded dorm in the middle of a large city. Here are some key points that I have found helpful to me over the years:

1) Educate yourself. There is a wealth of information out there. The first book I purchased was Tony Attwood’s original book Asperger’s Syndrome. I literally read this book knowing nothing about this disorder and finished the book feeling empowered to dig in and walk this road with my child.

2) Find a middle ground. You need to be an advocate for your child and no one can do that better than you. However, I have found that many Asperger parents gravitate to the ‘extremes’. There are the militant ones who are going to fight with their child’s school over everything. Yes, I agree we have to fight the important battles (and believe me, I have!) but if a parent is fighting EVERY battle to the death, eventually the school begins to tune you out. The other extreme will pull their child out of school and other activities because these things are too stressful. I don’t think schools, sports and clubs are the enemy. School (if it is a good one) provides an Asperger’s child with structure, socialization, peer modeling, educators with experience in teaching special needs children, and exposure to other people than just his or her nuclear family. Parents need to work with the schools in a partnership. So advocate for your child, but try to form an ally of the schools which have invaluable resources that can help your child reach his or her potential.

3) Utilize your support network. If you don’t have one, work on developing one. Parents, siblings, friends, support groups, teachers, pediatricians, etc. The list is long. There are people out there who care about you and your child. If you have a spouse, work together to find solutions that you can live with. There was a lady at our church who took my son out for a treat when he earned a week’s worth of “green lights” in Kindergarten. It made a big difference in helping him learn the routines of the classroom when he had such a tangible reward.

4) Ask questions. Write down questions as you think of them before you go to the doctor, counselor, or school meeting. I do much better in those situations if I don’t have to try and remember all of the questions that I had at home. For school meetings, take your spouse or other support person with you. If you have a friend or family member who is an educator and understands the process, invite them.

5) Observe your child. My son doesn’t articulate what he needs and wants particulary well. But I can tell what calms him by watching his reactions to situations. For my son it is music, but you have to learn what works best for your own situation. As a small child, he liked to be covered up. We made a fort over his bed. Enclosed spaces can sometimes feel safer, but you only learn these things by observing your child.

6) Educate your family members. I finally sat down certain members of my family and laid it out. I basically explained why he acts the ways that he does and I let them know that I would not apologize for it again. Once people understand the reason for behaviors that are typically considered “rude”, they tend to accept them more readily. I wasn’t going to feel stressed out every time we visited family. It made a big difference for me. Life is just too short to go around feeling like you have to constantly apologize for your child. People who don’t get it need to just stop being around your child.

7) Talk to your child about Aspergers. The time to do this will vary for each individual family. During elementary school, I didn’t ever use the term Aspergers or Autism. He just knew he was pulled for different activities than other kids. By late elementary, I felt like he needed to understand what he was experiencing and had the discussion with him. Now, we talk about it and he explains to his peers what things are like for him.

8) Don’t worry about things out in the future. I had to learn to take each day at a time. I would get overwhelmed and feel total despair when I started thinking about high school, college, dating, etc. So, I made a conscious decision to just look at this month, this year. By the time high school came, it wasn’t nearly as scary as it had seemed when he was 6 years old.

9) Set the bar high. I have learned that my son can follow rules and patterns. He can understand goals. I believe that the world out there isn’t going to make too many allowances, so even though he had an IEP at school, he knew that we expected him to try his best. By the end of high school he didn’t use the majority of his accommodations anymore. He learned how to function without the extra help for the most part. He also knew that if he genuinely needed the help, he should ask for it.

10) Don’t forget the other children in the family. It is hard for children to see a sibling getting extra attention or different rules. Involve the other children in the discussions and make sure they understand the reasons.

11) Just love him. That really needs no further explanation.

If you are a parent living day to day supporting a child with Asperger’s, I would love to hear from you. If you know someone who is, please share this link with them. It helps to know that other people are in the trenches with you!

Update: My son is now 20 and a junior at GA Tech. The first year almost killed us both–but we made it through and it has gotten easier for him. Certainly not easy, but at least he’s made a few friends and is familiar with the campus. Some days it feels like we are taking on step forward and two back. But, we keep moving toward graduation day and hopes for the future.

Photo credit: http://www.bbc.co.uk/history/worldwars/wwone/launch_vt_frontline.shtml