Review: The Hate U Give

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Copyright (Balzer + Bray/HarperCollins)

This novel gave me more insight into race relations in America than anything I’ve read up to this point. One of the best descriptors I can apply to The Hate U Give is “real”. It is raw, it is gritty, it is sad, and it is even funny in places. But I didn’t find it to be sensationalistic or gratuitous. For parents of younger readers, there is a fairly large amount of language, including multiple F bombs—but staying true to form, it is “real” language for the characters in the novel.

The book condemns police brutality, but not police at large. I appreciate the way Ms. Thomas creates a compelling and likable character who also happens to be a police officer. Having a character like Uncle Carlos creates balance in the narrative, making it clear that not all police officers are racist. I found Starr’s family to be compelling and well developed as characters. Every one of them reminded of someone in my own family. Some of Starr’s high school friends might be a bit stereotypical, yet truthful enough that you’ll likely also see similarities to your own high school friends—we all had at least one that wasn’t great for us, but we found him/her hard to “drop” from our life.

I am not a fan of rap music and know very little about the late Tupac Shakur. However, the meaning of the acronym THUG LIFE really made me think. As a pediatric nurse and certified teacher, I’ve spent my life working with young children. I see kids that seem broken, cynical and filled with rage because of the environment they live in. Some of this has already occurred by the time they enter our public school system in pre-K. As adults in our society, we need to work together and listen to each other in order to find real solutions to the causes of suffering. This was a book that was hard to read in many ways, but it was also a book that I needed to read—and I’m glad I did.

***Spoiler alert*** If you haven’t read The Hate U Give, you might not want to continue reading.

Starr’s life is abruptly changed during what should have been a routine traffic stop. Not only does she see her childhood friend gunned down, she isn’t sure for a long while that she won’t be shot herself. It is just her, her dying friend and the armed police officer who just shot her friend—alone on a dark street, until other first responders arrive on the scene. During these moments, the police officer aims his gun at Starr. The terror she feels during these tense moments comes through to the reader. Her internal monologue as she remembers the rules her parents taught her about interacting with police accompany her increasing anxiety as she watches her friend Khalil breaking those rules one by one. I found myself as the reader silently pleading right along with Starr for him to keep his hands in sight, don’t move, don’t argue, etc.

After the shooting, the police officer testifies that he mistook a black hairbrush in the door of the car for a gun. Khalil opened the door while the officer had walked back to his car to check on Starr. The officer saw this as an attempt to go for the gun and shot him in the back 3 times. The horror of the situation is palpable. Yet, Ms. Thomas creates a scenario that is very plausible.

At first she and her parents want to keep her identity a secret. Her parents want to protect her, as she has already suffered enough. Eventually, they help her understand that sometimes speaking out against injustice is worth the heat you’ll have to take for it if you ever want things to change. One of the best things about this novel is the transformation of Starr, as she becomes stronger and more certain in her beliefs. She also reflects on her own biases, and owns up to feeling ashamed of her friends from her old neighborhood once she starts making friends with affluent kids in her private school. My heart ached for her in the scene where she denies to her two best friends that she even knew Khalil when they ask her if the guy that was shot was her old friend. Any one of us who can remember the angst of our teen years will relate to Starr’s feelings in many ways—especially the way we tended to blame ourselves for things that were never actually within our control in the first place.

Starr’s parents particularly resonated with me. They are torn between wanting to stay in the neighborhood where they were raised and protecting their children from many of the pitfalls that are so common there. Garden Heights isn’t a particularly safe place to live. There are gangs, guns, drug dealers and looting going down. Hearing gunshots sounding at night is a common occurrence there. After Starr’s best friend is killed in a drive-by shooting, her parents decide to move all three of their children to a private school in the suburbs. Eventually, it becomes clear that it isn’t safe to remain in the neighborhood, and the family makes the painful decision to leave. We feel the pain and shame Starr’s father battles over his feelings that he’s selling out and abandoning his home to the gangs. It’s heartbreaking.

The most gut wrenching part of reading The Hate U Give is the realization that this story is the reality for thousands of young black men in America. Garden Heights was a fictitious neighborhood in an unnamed city and state in our country, but it could have been anywhere. For the young boys growing up in this neighborhood, there existed a lack of hope—a lack of the promise of a bright future awaiting them. This lack of hope is mirrored in real communities across this country. Starr’s father was able to leave behind the life of gangs and crime, but he makes it clear to Starr that it’s nearly impossible to do. He was only allowed to leave (without being killed) because he took the rap for a gang leader who was facing his third conviction and would have been sentenced to life in prison. Through his character, as well as Devonte and Khalil, it isn’t hard to see why young men in their situation might make bad choices, even knowing the potential consequences. Starr’s half brother Seven was probably my favorite character. The scene at his birthday/graduation party where he confronts his mother was so beautifully written, yet so painful to read. I found myself rooting for him the whole story, and would have been completely devastated if Ms. Thomas had allowed him to die (which I feared in at least two scenes!).

I hope this book creates honest discussion within communities. It is a discussion we need to have in our country, no matter how difficult it is to openly talk about. Of course, I’d love to hear what you thought of this book.

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A Tenacity the World Doesn’t See

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.12743546_10207121592136251_7231589288252981407_n

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.

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Fritz and Zoey. Photo courtesy of Ms. Mechelle Lang.

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.

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Yamaha Alto Sax. Image from Wikipedia

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.

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Photo copyright: The Georgia Institute of Technology

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.

 

Wolf Hollow: What Does Evil Look Like?

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Image copyright: Dutton Books for Young Readers, Penguin Group (USA)

Wolf Hollow is a book that I couldn’t write about for quite a long time. It required some time to think about first–to marinate in my brain for awhile due to its themes. The writing is amazingly descriptive and beautiful. It evokes the same beautiful rural imagery of books like The War that Saved My Life, To Kill a Mockingbird, and Because of Winn Dixie. And like those books, it also deals with some very adult issues that kids face on a daily basis in this world.

In Wolf Hollow, the main character Annabelle comes from a loving home and is surrounded by a large support network. Even though the novel is set during war time, she lives a relatively peaceful life until a new girl moves to town to live with her grandparents. Enter one of the most unlikely villains you’re likely to encounter in children’s literature. Betty isn’t your typical school-yard bully. She isn’t Nelly Olson on steroids. She is sadistic. Cruel. Manipulative. Dangerous. Dishonest. Evil. She poses a threat to anyone who comes between her and whatever she takes a liking to at the moment.

How could a young girl be evil? Ms. Wolk brilliant shows readers this as the narrative unfolds. Her writing is gorgeous, and makes the reader feel as if he/she is right there in the thick of it all. The story will force a reader to face prejudices and ask the question,”What does evil look like?” Kids and adults alike will root for Annabelle and Toby (a veteran of WW1) who appears to suffer from PTSD (known as shell shock back then) and keeps to himself.

Betty makes it her mission to torment Toby. Her methods are calculated and terrifying to read about. You will ask yourself, “How could a little girl be this cruel?” Almost as frightening as the fact that Betty would do some of the awful things she does, is the fact that people so readily believe her side of things. She’s like a spider, craftily spinning her web and waiting for an innocent victim to wander into her trap. If J.K. Rowling had written a book about a middle school aged Bellatrix Lastrange, Betty could have been Bellatrix’s best friend–they are cut from the same cloth.

Wolk’s perfect pacing builds to a momentous climax. I won’t spoil the ending, but be prepared that it will make you think. It’s not easy, and certainly not your typical fairy tale happily ever after. But when are endings ever that way in real life?

Go Forward with Courage

Sometimes book titles can literally be the hardest part of writing an entire novel. You can spend months or years thoughtfully creating characters, putting them into situations that create drama or suspense for your readers, and crafting dialogue that feels natural and realistic. But once the book is finished, finding the perfect title that feels worthy of the story can be elusive–nothing seems quite right. If you’re lucky, you’ll come across something that strikes like lightning, and you’ll know you’ve landed the perfect title.

That was the case for my latest novel, Go Forward with Courage. A central part of the novel deals with Michi and her family, who are forced to relocate to an internment camp in Arkansas after the Japanese attack on Pearl Harbor. For the thousands of families impacted by the Executive Order to remove all citizens of Japanese ancestry from the west coast, every step of their journeys to these camps took courage. But it didn’t end there. When they were finally allowed to leave at the war’s end to return home, what were they returning to? It varied of course, but for many of these displaced persons, they had nothing tangible to return to.

The title, Go Forward with Courage comes from a quote by a Native American Chief after his realization that he had no other choice but accompany his people to a reservation.

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“When you are in doubt, be still, and wait; when doubt no longer exists for you, then go forward with courage. So long as mists envelope you, be still; be still until the sunlight pours through and dispels the mists — as it surely will. Then act with courage”.

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When I came across this quote while writing the novel, the similarity of the plight of the Japanese-American citizens displaced from their homes to the Native Americans generations earlier seemed incredibly relevant. My character Michi, and the thousands of others like her, would need courage to face the unknown waiting for them when they returned “home” after the war. Some of the images captured from that time period, express more than my own words ever could.

I have so much admiration for the people who rebuilt lives after having them interrupted during the war. The courage it took is inspiring, and I hope that my story does them justice.

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.

 

 

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. 

 

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

Viewing Civil Liberties through a different generational lens…

As a writer of historical fiction, I always have to “check” myself against judging actions of the past through our current set of values and cultural norms.

The novel that I am currently writing is set during World War 2, and deals with the executive order issued by FDR to “evacuate” all people of Japanese ancestry from the west coast and relocate them to camps surrounded by barbed wire and guarded by soldiers. Granted I wasn’t alive during the 1940s, but from the extensive research I have conducted, most Americans believed that there was a military necessity for this at the time. Fear is a powerful motivator, and there was a widespread fear of further attack after Pearl Harbor. Therefore I would not presume to judge the people who lived in America at that time and assert that I would have defended the honor of my fellow citizens. Of course, I admire the people who did stand up protect their property while they were gone–which occurred in some instances. I don’t think we ever know for certain what we would have done in a given circumstance, even if we like that think that we’d have acted in a completely altruistic and humanitarian manner.

I did receive a bit of a shock recently when I was discussing my novel with a WW2 veteran in his 90s. After politely listening to me talk about the plot of the novel, he interjected that the American government was right to do what it did. He stated that the Japanese that were locked up did just fine after the war and it was for national security. I was honestly shocked to hear that this viewpoint would still be adhered to after so many years. From what I have read, not one of the people interned in the camps was ever found to be guilty of espionage. In fact, President Ronald Reagan apologized on behalf of the country years later and surviving internees received a reparation check from Uncle Sam.

Perhaps it is a lack of knowledge about this event that causes these misconceptions to linger. I know that I learned extremely little about the indignities suffered by these families as they were forced to sell their homes, cars and businesses to leave behind the only life they knew for a complete unknown. When they finally arrived at the camps, they lived in barracks covered with tar paper in crowded conditions. They had no privacy and no way to earn a decent living. In other words, they were completely stripped of their civil liberties. Shouldn’t this have been taught in depth during our high school and college history classes?

George Takei has spoken about his family’s experience in an internment camp in Arkansas. He has also brought us a Broadway musical Allegiance which I am extremely excited about. The best way for us to learn about what it cost the families is through the first hand accounts. I have read countless of these which are available online at the Densho site and at PBS. If this unfortunate time in our history is unfamiliar to you, I encourage you to take a look at these sites and make plans to see Allegiance.

As always, I welcome your comments and thoughts!camps7