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.

 

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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. 

 

Leaving a Kid (and part of your heart) at College

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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.

But now.

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!

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photo credit for gif image. Odyssey Online

 

A Tale of Two Boys: How to Foster Kindness in Kids

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Nothing makes a mom more aware of the kindness, or lack of kindness, shown by children than having a special needs child. During a sermon on Sunday, our pastor spoke of “hashtags” or labels as being things others have applied to us in our past. These could be things like #ugly, #stupid, #lazy, etc. What kind of people apply these hashtags to others? And how much power do we give them in our own lives? How can we encourage our own children to be supportive of others and use language such as #friend, #kindness, #encouragement?

I started thinking about my son who was diagnosed with Asperger’s Syndrome at age 4. He is now 18, so we have seen many examples of both good hashtags that have helped to motivate him, but unfortunately negative ones that he has carried around with him like a big battered suitcase. This labeling, both good and bad has come from other children, adults such as teachers and pastors, neighbors and even family members. But what struck me while listening to the sermon on Sunday was this: Why do some kids seek out opportunities to give a kid who feels awkward and out of place a boost up and others feel the need to give the kid a swift kick?

It isn’t just taking your child to church or enrolling them in Boy Scouts that is going to make the difference. How do I know this? Because I have experienced it first hand. The two boys I will mention in the blog were both raised in Christian homes, were active in church, and involved in Scouting. They both came from middle to upper middle class families with educated parents. The parents of each boy were active in their communities and seemed to have positive, loving relationships with other family members. But that is where the similarity stops.

Boy #1 was there for my son at a critical point in his life. We had just moved the family to Germany and my son didn’t know anyone there. Boy #1 made a special point to introduce him to his friends, show him around the school, invite him to Scouts and enthusiastically greeted him at the first meeting. Through the kindness of this boy, my son felt welcomed and affirmed. He made friends and adjusted to the new school better than we had dared to dream. The boy continued to be a close friend, always including him in parties and outings until the family moved away.

Fast forward 3 1/2 years later. My son was just starting middle school (ugh!) and we had just moved back to the small town in Georgia that we had lived pre-Germany. Boy #2 seemed at first like a great prospect to help ease the transition here. But rather than show kindness and compassion, he fluctuated between indifference and discouragement. If my son wanted to try out for a school team, Boy #2 had to point out that he didn’t stand a chance at making it. If my son made a statement at a scout meeting, Boy #2 felt the need to put him down for it. The arrogant way in which he disregarded my son was almost more cruel than if he’d called him names.

This young man had an opportunity placed in front of him to make a true difference in the life of another human being, but instead chose to be a detriment to my son’s attempts to make friends and fit in. What, if anything could his parents have done to encourage him to treat my son with kindness and apply a hastag like #Youcandoit!? With all of the blessings Boy #2 had in his life and the talent and popularity he possessed already, why did he feel the need to apply #loser, #friendless, and #notworthmytime?

I think as parents we need to enter into discussions with our kids about kindness. Yes, we need to model it in our own interactions with people but we cannot assume that our children will just absorb that by osmosis. When we visit our child’s classroom we can spot the awkward kid who needs friends from a mile away. Ask your child about him or her and if they ever play with them at recess or sit with them at lunch. Make a point yourself of interacting with that child when you are there. As a former teacher, it is amazing how much it matters when a child has a visitor take an interest in him.

Describe ways that your child could be a friend and what a difference that could make in the life of that person. Some of these kids can be hard to love and act in ways that don’t suggest they want friends. If you observe these behaviors, you as the adult can help your child understand the reasons that could be causing them.

Every single day I crave more kindness in the world. It just seems to be in short supply these days. Let’s help our kids learn kindness at an early age. They will be the better for it in the long run if they can live in a more positive world. Boy #1 is still someone that I cherish. He is now a student at Virginia Tech and I will never forget the positive contribution he made to my son by being his friend and giving him a place in the social strata of school life.

If you have suggestions that have helped your children demonstrate kindness to others, I would love to hear from you.

 

 

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.

***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!

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