Mom, author, nurse, teacher . . . reading the world around me

Tag: Parenting

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


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
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 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 Litmus Test


I think anyone who has a disabled sibling understands the concept of the litmus test. It generally begins in elementary school when our classmates discover that our sibling is “different” than most kids. Which classmates pass the litmus test and become friends that we are willing to risk inviting over? The ones who don’t make fun of our sibling. We instinctively select friends who show acceptance to our sibling.

This continues well into adolescence when we are teenagers and enter the dating scene. We see someone we think is cute, everything seems to be going along great, and then BOOM…it happens. He or she makes a joke or a rude comment about our sibling, or even someone with similar issues. All the wind instantly leaves our sails as we realize that we can never bring this person around our family. Honestly, we are better off without them, but sometimes it is hard to realize that as a hormone riddled teen with a crush.

When it is time to pick a spouse, it becomes even more tricky. Not only does that potential life partner have to be kind to our sibling, he/she must be willing to buy into the fact that one day there will be some additional responsibilities placed upon us as a couple to care for this sibling once our parents are no longer able to do it. This takes a special kind of person. Someone who loves us enough to sincerely understand the concept of “for better or for worse” and really means it.

I recently thought about couples that I’ve known over the years where one of the pair has a disabled sibling. The siblings have conditions ranging from Down Syndrome, Autism, severe cerebral palsy, and other developmental and/or physical delays. Each of these people have married truly loving and supportive spouses that have the patience and kindness to support them in the difficult road that often has to be followed. We come with a good deal of emotional baggage when we’ve been raised in a home where our sibling’s needs often took precedence over our own.

I’m grateful to have found my husband who passed the litmus test with flying colors and continues to do so every day. Thankfully there are people out there who do. But for those of us who’ve grown up with a special needs sibling, we’ve unfortunately seen plenty of people through the years who fail the litmus test miserably.


Photo by Contributed Photo /Times Free Press

Caring for Children who have Holes in Them

full of holes resized

My teenager has Asperger’s. I’ve shared that before on this blog. But his disability isn’t visible to anyone from the outside. As a pediatric nurse, my patients can’t say the same thing. Their little bodies are riddled with holes: G-Tubes, Colostomies, Trachs, Central Lines, IVs, and more, cause their bodies to contain holes. I wanted to explore a mother’s perspective in caring for a child who is full of holes. What pain would it cause her? What strain would it lead to in her marriage? How would her friends and family react? Would they be helpful or hurtful?

I published this short story today. The price is set for free because my motivation in writing the story isn’t to earn money, but to hopefully be of some benefit to people who are going through similar challenges or for people who would like to know how to help moms who are. The story is called Full of Holes. Just click on the title to take you to the Smashwords site where it can be downloaded for several different devices. If you read it, please let me know what you think. Thanks!

Building Strong Children


Frederick Douglass once said, “It is easier to build strong children than to repair broken men.” As a parent, that is both empowering and terrifying. We live in a culture that seems to encourage “passing the buck”. In fact, I just watched the president of FIFA, the governing body over World Cup Soccer, stand before cameras back peddling to distance himself from any personal responsibility in the recent scandals plaguing his organization. It would be amazing to see a leader stand up and say, “As the president of this organization I accept full responsibility for what has happened, and will devote my efforts towards discovering where lapses in oversight occurred. I vow to fix what is wrong within my organization.” This man was about 80 years old, and yet he still seems incapable of accepting consequences.

Now, I don’t mean to single out one specific person, but this was the most recent incident and is fresh on my mind. This mindset is so rampant in society that it isn’t hard to find examples. As a mother of two young adults, I have made mistakes and I’ve done some things right. But I have learned some things along the way that I thought I would share. Why? Because I think Mr. Douglass is correct. I think that we need to put the work in on the front end, instead of frantically working to undo the damage on the back end. I also agree that it takes a village to raise kids. So, here are my thoughts:

1. Don’t protect them from their bad choices. Sometimes good kids make bad choices. And sometimes those bad choices come with consequences that they need to face. Did I naturally grasp this concept? Absolutely not! I owe this bit of wisdom to my daughter’s third grade teacher, Ms. Bishop. When Rachel forgot to bring home her homework, I took her back to school to get it–or her friend who lived a few houses up would get her mom to make a copy of it for Rachel to complete and take to school the next day. Why? Because if she came to school without her homework, she had to do it during recess. Her teacher finally told me, “Mrs. Miles, you are a wonderful mother and you have the best of intentions. But (and here comes the best part!) you need to cut the apron strings and let your child stand on her own two feet.” I’ll admit that it stung a bit to hear it, but she was so right! By swooping in and saving Rachel from consequences of forgetting, I was enabling her and she was learning NOTHING. So, I stood back and let her face her recess loss a couple of times. She not only survived (shocking, I know) but it only took once or twice for her to remember to bring her homework. Not only that, she had to come up with a system to organize herself and began diligently keeping a planner. To this day, she lives by her planner and she graduated earlier this month Summa Cum Laude from college. I think the lesson Ms. Bishop empowered me to teach her made all the difference in creating a strong academic student, who could organize her time and keep track of assignments. After all, at some point Mommy can’t rush you back to school!

2. Let them fail at something. Fail? I can hear a collective gasp of horror from many of my parent friends already. But your child will survive a failure and learn a great deal from it in the process. How do I know? Because I’ve failed at things and more than likely you have to. It is okay, and it generally makes us stronger in the long run. I’ve seen both of my kids work their butts off to audition for something, only to get passed over. Sometimes teachers, bosses, and coaches pick favorites, and it isn’t fair. Or maybe sometimes someone is just better than you at something. But the world isn’t fair, and sometimes learning that lesson is a good thing. If we can help frame “failures” as learning opportunities, we are doing a great service to our kids. Try to avoid being one of those parents who races to the school if your child doesn’t get the grade you think he or she earned. Instead, help your child see ways that they could have studied harder or more effectively. Did your child pass up a chance to do extra credit? Did he skip a class and miss a pop quiz or a study guide? Chalk it up to a learning experience and move on.

3. Help them develop problem solving skills. Every time your child is faced with a problem, it presents him or her with a chance to figure out a way to solve it. Every time we tell them what to do to fix it, we deprive them of the opportunity to develop strong problem solving skills. I’ve worked with adults who literally freeze in a panic when a problem suddenly appears unexpectedly. Obviously we all love it when things go like they should without any glitches–but let’s be real. How often does life go as planned? If we send our kids out into life without developing strategies to come up with a Plan B, without it totally undoing them, we are sending them out unprepared. Eventually they will learn, but the stakes are higher and the lessens tougher when they are young adults than if they’d learned these skills as children.

4. Be a good example. Okay, ouch! This is a tough one for me. But it is something I’ve tried to become more cognizant of as time goes on. Our kids don’t listen to our lectures nearly as much as they watch us react to situations. That is where the real learning is taking place. If we freak out when we get lost leaving a city, or when the car gets a flat tire, we are teaching them more than we might realize. And it’s probably not the lesson we want them to learn.

5. Encourage positive thinking. Negativity is one of the most sinister of all the traits out there, and it can sap the strength from our kids. Negative thinking leads to low self esteem, which in turn can lead to a myriad of self destructive behaviors. This is a personal struggle that I have with one of my two children, and the best solution I’ve been able to come up with is to talk him through experiences and attempt to re-frame them in a more positive way. My hope is that eventually he will learn this strategy, and put it into practice himself. In retrospect, he’d have likely not survived middle school without some help framing peer interactions and problems with a couple of teachers. If you have a child who leans towards the negative in recalling every experience, then it requires ongoing diligence and support. This is one instance where leading by example is crucial.

6. Give them responsibility. One of the best ways to become a strong person is to prove to yourself and others that you can be trusted with responsibilities. I think my parent’s generation did a better job overall of giving kids a list of chores and responsibilities around the house than mine does. There is such a valuable lesson to be learned from being responsible for a pet, or cleaning a room, mowing grass or doing the dishes. One day, every one of us has to learn how to do those things. Self discipline is crucial for success in life, and home is a relatively safe place to develop it. Parents are likely going to be a bit less harsh when a chore isn’t completed on time than a future boss.

Essentially, we want our kids to be prepared for the challenges of the world so that they can tackle problems, and bounce back from failures without completely falling apart. We want them to learn to cope with whatever life throws at them, even when it is something major.

In addition, we want them to be able to express their emotions, and become confident about who they are as people. I would love to hear your thoughts on this topic. Did you get advice from a teacher that proved to be helpful to you as a parent? Thanks in advance for your input.

 Photo credit:

What I’ve learned in the Asperger’s Trenches


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.

***As of today, he is set to graduate from Georgia Tech on May 5, 2018. Once we cross this hurdle, the hunt for a full-time job will be our next one. Like I said above, I still take it one step at a time. Looking too far into the future feels overwhelming and just causes anxiety. Hopefully I can come back to update with good news about job prospects soon. Thanks for following!

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Life Lessons Learned on the Prairie

La petite maison dans la prairieYears ago while working at a Children’s Hospital in Atlanta, I was frustrated that all staff were required to attend a “Shared Values” seminar. Apparently the management of the hospital felt that the employees needed a lesson in how to interact with each other and the public appropriately. I dutifully signed up for my session feeling dismayed that we all had to take the training. My initial thought to completing the class? If every adult had been raised watching “Little House on the Prairie” we wouldn’t have the need for courses like this!

It has been 20 years and I still believe this to be true. Look around at what is on the news today. Then think about the lessons taught each week to millions of young people around the world on the show. I’ll tell you what I learned from the Ingalls Family that has stayed with me for many years.
1. Our value doesn’t come from our profession or bank account. The Ingalls Family struggled to make ends meet from the very first episode of the show. Regardless of the hardships that hit the family they always survived through hard work and faith. They pulled together and always came through with an even stronger bond. The rich family in town could hardly stand each other, but were constantly looking down their noses at the “poor” families in the community. I distinctly remember when the financially wealthiest man in town says the he believes that Charles Ingalls is the richest man in Walnut Grove. Why? Because he realizes that the man’s wealth comes from something of much more value than plain old money. And as I child, I got that message loud and clear. Through “Pa” I also learned that only people with their noses stuck in the air thought that hard working people smelled bad. The messages a young person took from that show was that every job in a community had value. Whatever task you were setting yourself to, do it with pride and do the best job you can. Don’t worry what snobby people think or say about your job.
2. Prejudice is never okay. The show tackled it all over the years. Black characters were added over the show’s run and racism was tackled firmly but with humor. It was always amusing to see Harriet blubbering on trying to remove her foot from her mouth–the woman had no tact in any matter and dealing with people of a different skin color was no exception! But the show didn’t stop with race. There was the Jewish man who always wore a hat, causing Albert to finally ask him if he wore the hat to cover horns. The man laughed and explained his reason for keeping his head covered. There was the disability issue with the blindness of Mary and Adam. An old lady that the town considered a witch, but may have had some type of mental illness. An obese man who left town because he felt his daughter was ashamed of him. Basically the take home point to kids is that the world is full of many different people. They look different from you, have different beliefs and practices, and may do things differently than your family. But all people have equal worth. Treat them as such. When you don’t, people get hurt.
3. Your children don’t have to get everything they want!! Wow, here is a big one in modern day America. Imagine children being told no and denied the material things they want. But they would be so disappointed! Sometimes I wonder what Charles Ingalls would say to modern parents so eager to give their children everything they desire. The value of children having chores and earning money to pay for the things they want is all but lost from what I see all around me. Parents think they are terrible if they don’t give their kids the latest Iphone, tablet, car, wardrobe, whatever. The list of “wants” is endless. There was an episode of a popular network show where the parents couldn’t bear to “disappoint” their daughter by not allowing her to go off to an Ivy League school that she’d been accepted to an the opposite coast. So, they put the entire family in financial jeopardy instead of allowing their daughter to be disappointed. Pretty typical attitude for most parents these days unfortunately. Charles was a wonderful example that our children need parents, not another friend. Say “no” when that is the right answer to give and hold firm. Love your kids enough to teach them the value of working for things they want.
4. Find joy in the small things. I remember as a young child watching the awe and wonder that Laura and Mary had while finding an orange or peppermint stick in their stocking. Charles and Caroline ended a long day unwinding with a big bowl of popcorn in bed. Laughing at the kids splashing with a dog in the creek. Life was full of small things that brought big happiness to the Ingalls Family. In 2014, it is challenging to find the joy in the small things but the opportunities are all around us if we look for them.

Think for a moment about the lessons learned on the prairie. Wouldn’t many of the problems we see on the news just disappear if people lived their lives like Charles Ingalls and his family did? I think they would.

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