We just got the official news that our summer camp for kids with trachs was cancelled this year. With all the closings due to COVID-19, it’s no surprise, but it’s absolutely gut wrenching for the campers and the volunteers who go each year. Especially for the campers. Last summer, as we packed up to leave, the little boy I drove up from Savannah asked me what day it was. I told him it was Friday. He promptly replied, “Then I want to come back Saturday.” He meant the very next day. Camp is a world of its own. It’s an escape from reality.
I’ve been reflecting a good bit this past week about camp. About what it means for kids with special needs, whose daily lives are filled with treatments, procedures and medications. Kids who are often singled out and maybe even bullied at school because of their differences.
This reflection led me to remember a hectic day last summer. We’d just gotten our group of campers into the cafeteria for lunch, when two of mine said they needed to use the restroom. One of them uttered those dreaded words, “I don’t know if I can hold it.” SO, we set off at top speed for the bathrooms. The two campers in my care had just shimmied through a row of other campers seated at long tables, when a little guy I didn’t know from a different special needs camp jumped up and stood between me and my little guys.
Before I could say a word about needing to catch up to my charges, he said (in such a serious tone of voice it was almost alarming), “I’m in that house too.”
He stared at me. Expectant. Waiting. I had no clue what he was talking about for a good 10 seconds (as I’m hoping we won’t completely miss lunch because we have to walk back to our cabin and changes clothes before the next activity). Then it hit me. I was wearing a T shirt with a printed Gryffindor logo on it. Luckily, I recovered fairly quickly, considering. “Oh, yeah,” I said. “I’m a Gryffindor through and through.” His face. It just lit up completely. We’d connected. Not through that physical place, as magical as it is. But through a world built by J.K. Rowling.
This is why I’m passionate about writing books for kids. They can’t always escape physically to a place where their problems feel miles away. But, hopefully they can always pick up a book and escape to a world built by an author. In these days of isolation, we need this more than ever! We need to build connections with people we might not get a chance to see in person like we used to. We need to see someone across a crowded room, and stop them to say, “I’m in that house too.”
Two years ago, I began writing a picture book about a special needs superhero named Jeremiah. He’s a regular kid with a regular family–until he discovers his superpower.
This isn’t an “issue book” to teach kids to be compassionate. It’s a fun, exciting and humorous story about an amazing kid who taps into a hidden strength. What the world might see as a weakness (the trach tube in his neck) becomes the source of his superpower. He names his power The Super Tornado Blaster and practices using it until he learns to control it. There are a few mishaps, of course. But eventually he is able to stop a notorious super villain’s crime spree in his town.
When I finished the manuscript over a year ago, I wrote a blog post about it. Since then, I’ve shared my story with writers, editors and illustrators at conferences. The response has always been positive. Enthusiastic even. But then it comes back to the world of publishing. It’s a business, you see. And books only sell enough copies to be profitable if they appeal to the widest possible audience. This kind of book is considered a “niche” book. Considering the amount of interest it’s already received, I’m hoping it’s much more than that. I dream of this book being read to school kids, by parents and grandparents, and even some kids who want to read it over and over to themselves. I envision the book being given to kids attending special needs camps in the summer, to families with a new trach patient, and to kids who are fans of superhero stories in general.
April 1st, my Kickstarter Campaign launches. It will run for 30 days, and my project goal is set high enough to cover the costs of publishing the book with the help of a professional illustrator. If you’d like to see a book in the world featuring a medically fragile child brave enough to take on a super villain, please support the campaign. It will take the help of everyone I know to share the word about this project. Thanks in advance!
Update: Check out this great early concept character of Jeremiah Justice by talented artist and SCAD professor Rashad Doucet!
Several years ago when I taught fourth grade, I attended a training on childhood poverty. We were each handed a tool to measure how comfortable we were doing various tasks. The questions were things like, “Would you know how to cash a check without a bank account?” and “Could you organize a formal function for 300 guests with a seating chart?” I don’t remember what the exact questions were, but when I was finished and was told how to “score” my inventory, it revealed that I was solidly middle class. How could this assessment measure my social class? It simply looked at the tasks that I felt I could easily accomplish. I felt completely comfortable performing tasks that middle class Americans tend to perform on a regular basis, and because of this “comfort zone”, I was categorized as middle class.
Why is this important? Because most teachers in America come from a middle class background. It’s what they know. It’s where they are comfortable. It’s what they understand. Therefore, when planning lessons, assigning homework, holding conferences with parents and interacting with students, the teachers are viewing each situation through a “middle-class lens.”Through this workshop, it became apparent to me that the very way I perceive the world, react to situations, evaluate objects and behave are all tied to my socioeconomic level.
And this is fine if I’m teaching in a school where my students all have the same perceptions and experiences. But what about when we have students who live in poverty? When assigning homework and projects, don’t I make the assumption that my students will have pencils, crayons, paper and electricity? And to be honest, don’t we tend to assume that a student will have a parent to help them? Because we help our kids and our own parents helped us. This is where we can run into trouble.
The book, How to Steal a Dog, offers readers a glimpse into what life is like for a child living in poverty. Even though Georgina’s family has lost their apartment (after being abandoned by her father), life goes on for them. Her mom still has to work and the kids still have to go to school. They live in their car with no assurance of safety, no comfort, and no real hope that things will get better any time soon. Georgina’s teacher isn’t aware of her changed circumstances and makes incorrect assumptions.
I highly recommend this book. Read it yourself and read it with your kids. It offers a wonderful insight into what life is like for families living in poverty. Families who are hit with unexpected setbacks or tragedies that change their circumstances in the blink of an eye. If you’ve read this book, I’d love to hear what you think. Also, if you’re a teacher with experience teaching children who live in poverty, please reach out and let me know of your experiences.
My heart soared when I read the first line of Grandma’s journal. “Today has been perfect.” Wow, what could be better? She was 28 years old, married to the love of her life and a new mother. But on the very same page, I read how scared she was to think of her little boy ever being sick. Fast forward 20 years, and that beautiful young man was dead from brain cancer which struck him during his first year of college. Reading the intimate thoughts of a person I’d loved so dearly was an emotional roller coaster. However, I learned some lessons from her words that I want to share.
My grandparents loved each other. Almost daily, she expressed her gratitude for the wonderful man she’d married. I delighted in reading of my grandpa coming home from duty at the Naval Hospital in Rhode Island where they were stationed and helping wash and fold diapers, cook dinner, clean dishes or anything else to help make things easier for my grandma. So much for my preconceived notions of gender roles of American couples in the 1930s!
They helped their families no matter what. Even in the midst of a depression and a cut in my grandpa’s navy salary, they sent bi-monthly checks to help siblings go to school and sent money to help her parents “make ends meet” each month. They would drive 2 hours to provide respite care to in-laws who were caregivers for an elderly parent. Many times over the months chronicled in her journal, my grandma wished she could help even more and expressed worry for her family members.
Bank were literally closed. After mention several times of bank closures, I went and looked it up. Sure enough, in an effort to restore confidence in American banks (by keeping people from rushing the banks to remove their money) FDR closed banks for a period of time. Many times she wrote of uncertainty about the future and worried how they’d manage.
Some things never change! Certain emotions and sentiments are universal. Over the course of these months, Grandma expressed her frustration with “politicians in Washington”, her hopes for the future, her love for her child and spouse, and her gratitude for it all.
President Roosevelt was almost assassinated. I probably read this in a text book years ago, but I’d obviously forgotten it. Grandma mentioned her brother going to Washington for the inauguration of FDR (which strangely was in March, not January) but also expressed her shock that a month earlier someone had tried to kill him. Sure enough, back to the Internet I went, and discovered that when he was still President-elect, a man in Miami fired shots at him.
They used funny expressions in the ’30s! I learned that “plum caflooey” means an awful lot of something and that if you’ve “fallen off the roof” it’s time to stock up on feminine supplies for the month. Also, if a person is “prickly”, you may just want to give them some space. I’m sure there are more, but these are the ones that jumped out at me. 🙂
If you have the chance to read a journal of a loved one, please do. It was such a treasure to me and it creates the desire to leave words for my future grandchildren to read.
I finished reading Wonder in March, but I can’t stop thinking about this book. I’ve recommended it to more people than I can keep track of. The ones who’ve read it get back to me and thank me for recommending it. The book is just that good. This book resonated with me for several reasons. First, I grew up in a family with a sister who had special needs. I also have a son with special needs. I’m a pediatric nurse who’s cared for children with the same kind of anomalies that the main character was born with. Finally, I taught elementary school for 4 years and high school for 1, and Ms. Palacio nails school dynamics beautifully.
If you haven’t read this wonderful book yet, here is a brief introduction: August Pullman has never been able to attend school due to his extensive medical needs. He was born with severe craniofacial anomalies, and has had many surgeries. At the opening of the story, his parents have decided to enroll him in a private school. Auggie is nervous about how the other kids are going to respond to him. The principal picks three kids that he thinks will help ease the transition for Auggie, but it doesn’t work out so well. (It’s more complicated than that, but I don’t want to give spoilers!) However, there is another student named Summer who befriends Auggie without prompting from anyone. Through the narrative, the reader becomes a part of the Pullman family as well as their extended family and friends.
The story unfolds through multiple perspectives. Even though Auggie is an extremely observant kid, there is no way he could know the motivations and back story for every other character in the book. Palacio beautifully puts us inside the head of each character, and this is one of the reasons this book has such a huge heart. No one is a cliché, but a fully developed character with motivations guiding their behaviors.
The book is written with humor. Even though I cried in many places, this book is not in the least bit depressing. The Pullman family relies on humor to get them through the tough times. I came to love this family so much. They made mistakes and they didn’t always agree. But they loved each other and it comes across so beautifully in the writing.
The beautiful writing itself makes the book a pleasure to read. In the very beginning of the book, Auggie tells us, “the only reason I’m not ordinary is that no one else sees me that way.” He is perceptive and notices the way others react to him. He also shares at one point that if he had a magic lamp, he’d wish for an ordinary face. Being inside of Auggie’s head doesn’t feel like a pity party. But the frustration he feels that even his own family doesn’t seem to be able to allow him to be “normal” comes across beautifully. It’s gut wrenching, but at the same time it’s hopeful.
Via’s experiences were the ones that resonated the strongest for me because this teenage character is able to put her family’s existence into words better than I’ve ever been able to. When it’s Via’s turn to tell the story, she compares her family to a solar system. “August is the Sun. Me and Mom and Dad are planets orbiting the Sun. The rest of our family and friends are asteroids and comets floating around the planets orbiting the Sun.” Wow.
Another beautiful part of Wonder that was especially meaningful for me was the relationship between Via and her grandmother. In her early years, having her grandmother’s unconditional love and adoration helped to offset the dynamics of her nuclear family. My grandmother was exactly this for me. And just like Via, she died unexpectedly when I needed her support the most. Via’s grandmother shares a secret with her about why she feels the way she does. “I love Auggie very, very much,…but he has many angels looking out for him already, Via. And I want you to know that you have me looking out for you.”
This book is “real” in every since. Palacio doesn’t sugar coat anything. She allows Auggie to be resentful of “normal” kids at times. Via feels betrayed by her mom at times when she focuses so much attention on Auggie and his needs. The parents have arguments. Some kids are just plain mean, because let’s be honest, some kids just are. Perhaps the best part of the authenticity of Wonder is that is shows how acts of kindness that might seem small at the time, can have an enormous impact on someone who needed the kindness. In fact, this book started the Choose Kind movement through American schools.
To say that I recommend this book is an understatement. If you haven’t read it, you can go here for more information from the book’s publisher. If you have read it, please share your comments. I’d love to hear from you.
As an author, a mom to a special needs son and a pediatric nurse, I am always on the lookout for books portray a realistic representation of the American demographic. We are not all “the same” and that is one of our country’s greatest strengths. One underrepresented group of kids that I’m particularly sensitive to are kids with ‘disabilities’ that make them look or act different from other kids. Here are some picture books for very young children that can begin to introduce characters with special needs in a positive light.
Keeping Up With Roo by Sharlee Glenn
I will admit that this book hits close to home. My older sister Mary Beth was always so excited to be an aunt. But each of her nieces and nephews, as they grew older, came to realize that she was different than other adults. This is what happens to the main character Gracie in this story when she starts school. When Gracie brings her friend Sarah home from school, she feels embarrassed about Roo’s behavior. Like all children who have a family member who is “different”, Gracie has to comes to to terms with her aunt’s differences and realize what is really important in life.
Susan Laughs by Jean Willis
I love the fact that this picture book focuses on all of the things the main character Susan does that are exactly like every other kid in the world. It isn’t until the very last page of the book that the reader will discover that Susan is in a wheelchair. I took care of a beautiful, smart and sassy little girl who uses a wheelchair and I see her on every page. I highly recommend this book to parents of preschoolers. When you reach the end of the book, the illustration of Susan in her wheelchair provides the perfect teachable moment to discuss all of the similarities Susan has with your own child.
3. My Brother Sammy Is Special by Becky Edwards
I love the way this book explores the complex sibling relationship that occurs when one of the sibling’s has special needs. Generally that sibling is parented differently, with a different set of rules and expectations. The author allows Sammy’s brother to express his resentment and frustration, but ultimately focuses on his love and concern for his brother. This book would be the perfect gift for any child with a special needs sibling.
4. Just Because by Rebecca Elliott
What I love most about this book is that the younger brother Toby is too young to understand exactly why his big sister Clemmie can’t do the things that other kids can–but he doesn’t need to. In his innocent and accepting heart, he just loves her like she is. The author depicts the positive things these siblings can do together, even if it isn’t what most siblings can do. The writing is beautiful and the illustrations are enchanting. Children with siblings like Clemmie are going to be faced with many challenges as time goes on, but this book’s purpose isn’t to tackle the hard stuff. It’s to focus on the love and affection that is at the heart of the sibling relationship. And it does it beautifully.
5. A Friend Like Simon by Kate Gaynor
This book doesn’t focus on the sibling relationship, but on the struggles kids on the autism spectrum have making friends at school. I love this book. I see so much of my own son in the character of Simon. This story is told from the perspective of a kid who is trying to be Simon’s friend at school. But it isn’t always easy. It takes more time and effort to get to know kids who are on the spectrum, but this book shows that it can often be well worth the effort. As a mom of a “Simon” myself, I appreciate the kids who make the effort.
6. The Invisible Boy by Trudy Ludwig
For any parent of a quiet child that’s felt left out of the “popular group” at school, this book is a true find. The illustrations by Patrice Barton add to the impact of the words because Brian (the invisible boy) starts out gray and becomes more colorful as he begins to see himself as fitting in with someone–anyone. This book truly shows that it only takes ONE kind child to reach out to an “invisible kid” and make them feel a part of a class. Parents, I urge you to teach your children to be this one child. There are “Brians” out there in every classroom. I’ve taught elementary school, and I’ve witnessed the change one child can make.
This list is certainly not inclusive of all the excellent books out there. However, these 5 titles resonated with me in a special way. If you have other books to recommend, please comment and let me know about them. I’d love to hear from you!
**Please note that I am not the copyright holder for any of these books, and am using the cover images to aid in readers locating the books at their local stores or libraries.
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!”
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.
So, it’s that time of year again. My Facebook feed is filled with posts and pictures of my dear friends leaving their kids at college. So much goes into that big day as any parent knows. I’ve been there and done that twice and it wasn’t easy either time. And endless loop of thoughts played through my head each time. Did I teach her/him enough? Does she/he know what to do in an emergency? What if she/he gets homesick but doesn’t call home?
My son has Asperger’s and we had to leave him at Georgia Tech in Atlanta. It was huge, busy, loud, and so terribly far from me. His mom. No one else knew him like me. But who was I to deny him his shot at this dream to go to Georgia Tech? Has it been easy? Heck no! That first year almost killed us both. But tomorrow he begins his junior year and he is still a Yellow Jacket through and through.
Flashback to 1986. What do you know? My mom felt the same way. She shared with me this journal entry that she wrote the day I started college. She gave me permission to include it in my blog.
I left her today.
So brave. So full of determination.
She’s waited so long for this day.
It has been so long coming and there has been so much pain along the way.
She stands perched on the brink of her future.
Eager, and just a little bit afraid.
She’s a college student at last.
I have to admit I got a bit choked up when I read my mom’s words written about me. She knew me much better than I gave her credit for.
Here’s to fresh starts and new beginnings. To every college student and college parent out there tonight, just know that you’re not alone. You’re in good company. Go out there and knock ’em dead kids!
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.
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.
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.
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.