reading

As editor-in-chief of ASQ, I have had the pleasure (a word I rarely use in this context!) of editing Alyson’s articles. A gifted storyteller, Alyson is able to turn the mundane into the extraordinary, and deliver life’s important messages in ways that resonate and linger. While known and very much appreciated for her “lemons into lemonade” humorous style, she is equally at home addressing serious—even profoundly deep—topics.

In Autism Every Day, Alyson shares with her readers many of her best-loved stories and some brand new ones. Those familiar with Alyson’s “all it takes is all you’ve got” approach to parenting will no doubt be thrilled to re-visit her guys, and to have the collection in a single volume. Those new to her work will find her wit, wisdom, and style both engaging and refreshing. More than that, they will find the Beytien family’s esprit de corps, which Alyson so beautifully conveys, inspirational.

Readers will find within the pages of this book more than just a collection of beautifully rendered stories that will sometimes provoke laughter, and other times tears. They will also find a roadmap for living life to the fullest, for after all of the stories are told, it is Alyson’s message that will endure—that the secret to handling autism, every day, is to fully accept and respect your children for who they are, and more than that, to celebrate their quirks as you rejoice in and honor their gifts.

INTRODUCTION

“Hello, we have autism …”

I find it difficult to introduce myself to people. Because of work and civic engagements with my husband, I am frequently required to introduce myself and my family. The dilemma: Do I announce our autism immediately and wait for the gasp? “Hi, I’m Alyson Beytien and I have three sons with autism.” (gasp! silence! stunned look!) I’ve always wanted to be introduced as “Stunningly beautiful and amazingly intelligent,” but that will take a lot more sleep and plastic surgery!

Introducing my sons is more complicated than a single sentence can accomplish. Spencer is 20 years old, 6’1” tall, 150 lbs., and has a diagnosis of Asperger’s syndrome. He understands most sarcastic comments and college humor, has difficulty initiating conversation, loves video games, anime, and used to eat only white food. Joshua is 19 years old, 6’ tall, 160 lbs., and has a diagnosis of high-functioning autism (although on any given day, he is not functioning well at all!). Josh is currently interested in mythical creatures, wild animals, loves to surf the internet, read, draw pictures, eat at Burger King, and needs to know his schedule for the next six months or he has an emotional breakdown. Zachary is 17 years old, 6’3” tall, 190 lbs., and has a diagnosis of autism. He loves Burger King, wants to do anything his brothers do, uses an augmentative communication device, gives great kisses, and loves to swim. Zach struggles with anxiety and aggression, and works harder than anyone I know to participate with other kids.

And even having told you that, you cannot truly understand my family. The boys have made great progress in their ability to enjoy and live their lives. Each day I am amazed at what they do. Zachary spontaneously said, “love you Mama” just two months ago. Would the incredible joy of that moment be understood by the casual person who wants to know who we are? Joshua is the most loving, funny, “quirky” guy, and says the most outrageous things! Will his Sunday School teacher be able to see the humor in his comments if she doesn’t know the way he thinks? Spencer has come so far that I question whether to tell his diagnosis to the college kids who come to our home. But if I don’t, and he says something socially inappropriate, will they ever come back?

My boys’ disability affects every aspect of our lives, but it is not the defining description of who we are as a family, or as individuals for that matter. I am not just the mom of three sons with autism—I could also say that I am a quilter, gardener, scrapbooking fiend, pianist, consultant, educator, wife, sister, daughter, and friend. If I used those descriptions of myself, would my introduction still make others gasp and give me stunned looks?! Just as my sons are also people beyond their autism, so am I a person beyond being their mom. But if you don’t know about the autism, do you truly know about me?

My husband and I have worked with our sons to help them understand their disability. To know the words and to understand the ways in which their disability affects their lives. Not to give them an excuse nor a label. This information has provided a platform for them to tell us how they think and process their world, and an opportunity for us to discuss with them how others might think or feel differently than they do. We began discussing their autism with them when our first son, Spencer, was in the fourth grade. For a while after that, he introduced himself as “Spencer Beytien. I have Asperger’s syndrome and my brothers have LOTS of autism.” That sure got a lot of attention! And Joshua frequently introduces himself alongside his current interest—“Hi, I’m Josh Beytien. Do you like Big Boy 4-6-6-4 steam locomotives built in the Roanoke shops of Virginia in the 1930’s?”

After people meet me, I frequently hear the comment that I am “not what they expected.” Makes you wonder what they did expect of a mom who has three kids with autism. (Or any of us moms for that matter!) A straitjacket? Bitterness? Dark circles under my eyes? (Oh, wait, I DO have those!) Sometimes I wonder if everyone will look at us or treat us differently if my introduction includes the diagnosis? Will they look for problems that aren’t there? Or, without knowing the diagnosis, will they have the understanding to forgive the social indiscretions? I’m frequently uncertain of the best route to take.

The reality is that I am simply a mom. I have good days and difficult days. I cry, laugh, worry, and live like everyone else—just more intensely and frequently than most! I want to make the best decisions I can for my boys. I want them to be happy, healthy, and know that they are loved intensely. Stress, Laughter and Joy live side by side in our home—and their names are Spencer, Joshua, and Zachary.

This book is a compilation of essays, some of which were published in the Autism Spectrum Quarterly magazine. The stories and strategies cover our 18 years (and counting!) of living with autism. My wonderful husband has tried to get me to assemble this collection for some time. He finally wore me down. If you don’t find anything in this book helpful, blame him. If you do find some of my ideas helpful, then remember that I’m “stunningly beautiful and amazingly intelligent.”

I know that many of you struggle with the same issues I do. I hope this book will be an opportunity to share in the struggles and joys of raising our kids with autism. I believe that by sharing some of our family’s challenges and successes, you will recognize your own and know that you are not alone. I hope that this book will provide you with a chuckle to brighten your day and a strategy to make your life easier! So, by way of introduction: “Hello, we have autism … ”

PART I

Characteristics of Autism

CHAPTER 1

Foreshadowing: Early Signs of Autism

Prologue: In January of 1994, I wrote the following letter to my extended family.

Spencer was about to turn three years old, Joshua was 20 months old, and Zachary was two months old. We had just moved to a new town, new neighborhood, new home, and we did not know that autism would be part of our lives in the coming months. And email and the internet didn’t exist!

Dear Family,

Thanks so much for the letter! It truly was the highlight of my week and I am going to try to reciprocate the feeling by writing to you. Provided, of course, that Zachary will sleep more than twenty minutes (not his habit), and Joshua will not climb all over me and scream (definitely his habit), and Spencer will leave both of them alone (guess what his habit is). Batman just came on TV, so maybe I can get them to sit still for a while.

The boys are definitely keeping me hopping. Last Friday was a day from hell. Spencer got up at 5:30, then Joshua a few minutes later, so I was not coherent enough to start the day. They managed to spill two glasses of milk at breakfast, and pour syrup over the table. Then, when I sat down to nurse Zachary, Spencer and Joshua went upstairs to play. After a while, I realized that I hadn’t heard any sound from them. I went upstairs (carrying the nursing baby) to find Spencer behind the cradle, snipping away at the dust ruffle with Craig’s moustache scissors. I sent him downstairs, answered the ringing phone, then came downstairs myself. Only to find the two of them in the laundry room, pouring laundry soap all over each other. At this point, I had to lay Zachary down, which made him unhappy because he wasn’t finished eating, so he started screaming. Took both boys upstairs to bathe (do you know how difficult it is to get detergent out of hair?), put clean clothes on them, and sent them downstairs again. I put a Bugs Bunny video in and went to sweep up the laundry room and hallway. Zachary was still crying at this point. After cleaning up, I realized that they weren’t in the family room watching the video. I went upstairs again to find them in the guest room, emptying all six drawers of unused children’s clothes, throwing them all over the room, and laughing gleefully. At this point, I am ready to do bodily harm to somebody! I sent Spencer to his room, took Joshua downstairs, and came downstairs to calm down and finish feeding Zachary. When I went back upstairs to talk to Spencer, I found that he had emptied all of his dresser drawers also. I called Craig and told him not to be surprised if he came home from work and found his children in the snow because something needed to chill them out! Craig asked if he should bring home chocolate—smart man.

Later that day, after I tried to put Joshua down for a nap (which is something that never really happens), I came downstairs to find the toaster out of the cupboard and plugged in. A chair was next to the freezer (Spencer’s favorite food is a waffle, and it is in the freezer) and there was a waffle in the toaster. The toaster was actually cooking, a fork and knife was on the table, along with a bottle of syrup and a very happy Spencer looked at me and said, “I did it Mama. I did it!” I know that is supposed to thrill me, and truthfully it does, but it also makes me wonder what else he will do when I’m not around!

Spencer is definitely in his three’s. He has become a trifle defiant and disobedient. I am reading every parenting book on discipline that I can find. He seems to have no remorse when he does something wrong. He jabbers constantly, but usually none of it makes any sense. I could have sworn he was talking much better a few months ago. I’m thinking of having him tested next month for his verbal skills. If he is behind, then the school district will put him into preschool. He is very loving towards Zachary—wants to hold him, and is always telling me when Zach is crying (which is often!). He absolutely LOVES the Mighty Morphing Power Rangers (do you have that TV show where you live?) and is constantly asking to watch it. Between that and Bugs Bunny, we have a very interesting viewing schedule.

Joshua reminds me of a bear—he is large in size (almost as big as Spencer) and very passionate in temperament. He is either very angry, very happy, very funny, very irritating—you get the picture. He loves Bugs Bunny, 101 Dalmations, or anything with a dog or bunny in it. He will watch the movies and literally stand two feet from the TV and dance with happiness. It is the funniest thing to watch. He is currently into matchbox cars and carries two of them around with him constantly. He also likes to sleep with his cars. He is an independent child—he doesn’t like to have Spencer mess with him or his toys. He has gotten very adept at pushing Spencer away, hitting Spencer when he bugs him, and he also tackles Spencer to throw him to the ground. He is a very physical child. He loves to snuggle in bed with us, to sit next to us or on top of us, anywhere where he can be touching us. His favorite thing is to hold your hand while he is watching cartoons—strange, isn’t it? He loves to read books, and we read Brown Bear, Brown Bear about 20 times a day. He never seems to tire of it. Joshua seems to be the most affected by Zachary’s arrival. He has recently begun to climb on the couch when I am nursing Zach and body slam me, or whine and cry and try to push me off the couch. Not a really pleasant experience, but I’m hoping it’s a phase.

Zachary—well, at two months old, he doesn’t have much of a personality yet. He looks a lot like Spencer in his physical features. He is a catnapper, but does sleep pretty well at night. He struggles from 6:30-10:30 every night, crying, arching his back, and screaming. Craig is holding him right now to give me a break and let me write this letter. We put some James Taylor on the CD and Craig is dancing and singing with Zach. He seems to be calming down. He is focusing on our faces now, and we even get a few smiles every now and then. He has dimples, which is good because he looks so much like his brothers, it might be the only way to tell them apart!

That’s it for the excitement in our lives. Craig is working hard, I’m surviving the kids, and we wish we could see you more often. Take care and give everyone a kiss for us!

Love, Alyson

It’s easy to look back on our children’s lives after we have a diagnosis and wonder why we didn’t see the signs. For many families like us, a lack of experience with autism and child development prevents us from noticing the delays. I don’t remember even hearing the word “autism” until a professional said it in relation to Josh. With the increased attention that autism has been given in the media in the past ten years, many parents are questioning their children’s development earlier than ever before. This is a good thing! It would be much better to have a child evaluated for autism and find out that there is nothing wrong, than to go months or years without getting the early intervention that is needed.

I was actually relieved when Joshua, and then Spencer, was diagnosed with autism. I had been deeply worried that their behaviors and challenges indicated that I was a terrible mother and parent. Knowing that there was a reason for the overwhelming stress I felt allowed me to provide a more appropriate environment and response.

STRATEGIES FOR DIAGNOSIS

1. Evaluate Language and Communication.

The majority of children seen for an autism evaluation have language delays. This is because language is something we notice. We are a world of verbalists—and if a child isn’t communicating with verbal language we notice it immediately. Individuals with autism are concrete, literal thinkers. They are visual, kinesthetic learners. They have to see it, touch it, and experience it in order to understand it. Individuals with Asperger’s Syndrome and high-functioning autism have verbal language. But they struggle to communicate effectively. They also may not have any other form of communication—gestures, facial expressions, and body postures may be very limited. People communicate through multiple forms, not just verbal language. But the presence of some verbal language typically delays a diagnosis.

2. Observe Social Interaction.

Social interactions and language are intimately connected. Without appropriate verbal language, people struggle to interact socially. Without an ability to understand other people’s perspectives, social interactions are stilted and awkward. If social interactions are limited, then language does not develop appropriately.

Individuals with autism spectrum disorders are easily overwhelmed by their senses, often unable to screen out distractions. This not only limits their ability to communicate effectively, but also contributes to the misreading of social cues, social situations, and a misunderstanding of the expected behaviors within a given environment. A person with autism may be highly skilled in computer repair, but they will never get a job or keep a job if their social skills are inappropriate. Teaching appropriate social interaction skills is critical for lifelong success and personal fulfillment.

3. Schedule Evaluations and Assessment.

If a child is exhibiting any of the early signs of autism, an evaluation should be scheduled. Assessments should include specific language testing, observation of social interactions, assessment of sensory processing, and a behavioral assessment. At this time, we can only diagnose autism by observation. There are standardized assessment tools that assist in quantifying the observed behaviors and determining whether the person has an autism spectrum disorder. Ensuring that the assessment is done with a full team will provide the most comprehensive insight and appropriate diagnosis.

CHAPTER 2

The Gathering: Passions and Obsessions

A friend of mine was asked in a job interview, “What piece of trivia do you know, and why is it important to you?” When she related this story, she told me that she could not think of a single bit of trivia.

Hang out with a child with autism for any length of time and you’ll learn things you never thought you needed (or wanted?) to know. Our kids could easily beat Ken Jennings at Jeopardy on the subject of their interests! Some might even be able to calculate the perfect odds for which suitcase holds the million dollars on Deal or No Deal. Not that we’ll ever see our kids on the game shows—they’d never survive the screaming audience. But our kids certainly do know “stuff “—trivia, tidbits, and pieces of information that other people don’t know (and probably don’t care about).

My boys’ intense interests have filled my life with all kinds of trivia over the years. For instance, I know that the Big Boy 4-6-6-4 steam locomotive was built in the Roanoke, Virginia Railroad shops in the 1930’s. I know that the Charizard Pokemon character has a Fire power and can fly. I also know the names of the different species of whales, sharks, and warthogs, and that a peccary is a type of wild pig indigenous to Arizona and New Mexico. I can quote Disney movies, and sing all the songs verbatim! I know which Paleolithic period the Allosaurs lived in; what their diet consisted of; and their size in comparison to the T-Rex. I know that the red Mystic Force Power Ranger morphs into a Phoenix; that SpongeBob’s pet snail is named Gary; and that Kool-Aid was invented in Hastings, Nebraska.

The intense interests or passions of our ASD kids are often viewed as weird or problematic. Granted, not many people want to have in-depth discussions on electrical towers, vegetables, or Neanderthals. But, to me, such passions are directly connected to each individual’s personal interests. I don’t want to have deep discussions about Brett Favre and the Green Bay Packers, but the majority of people where I live think this is a subject that everyone wants to discuss.

Importantly, when it comes to kids with ASD, you need to know that it’s not enough just to KNOW about dragons, African mammals, and Yu-Gi-Oh characters. They have to also COLLECT their special things too! When Josh was eight and Zachary seven, their passion for trains knew no bounds. They read books on trains, watched two-hour videos on steam locomotives, and drew pictures of engines for hours at a time. We worked our family vacations around where the nearest railroad museum was located. While at the National Railroad Museum in Green Bay, Wisconsin, Joshua asked one of the engineers conducting our tour whether the particular engine we were looking at was a Shay or a Mikado engine. The engineer looked shocked at the question from such a young child, but proceeded to answer it. (It was a Shay, in case you were interested!) He then carried on a five-minute, in-depth conversation with Josh about steam locomotives. At the time, we thought Josh’s knowledge was sketchy at best, until the engineer said to us, “I’d hire him on the spot if he were 16!”

The boys collect everything they can about their current interests. Thank heavens for Ebay and the Internet where we can search for the rare Obelisk the Tormentor Yu-gi-Oh card or the latest Ertl Thomas Engine. Currently, in my home, we have collections of Pokemon figures, Bionicles, Cars miniatures, dinosaur figures, Thomas the Tank Engines (in wood, metal, plastic, HO scale and O scale), LGB trains, BBC channel videos, anime DVDs, dinosaur books, colored markers, Super Balls, swords, dragon figures, thousands of Legos, and fabric.

FABRIC, you’re thinking? Well, that’s MY collection. Nothing is dearer to a quilter’s heart than her fabric stash. I add to it whenever I can—even if I don’t have a specific project in mind. I can’t resist the colors and patterns. When I travel, I always try to find time to locate the nearest quilt store so I can add to my collection. Owning a few yards of a fabulous color or beautiful print gives me a bit of joy—a pop of pleasure.

STRATEGIES FOR DEALING
WITH SPECIAL INTERESTS

1. Control the Access, Not the Interest.

Everyone gets to choose their interest or hobby. But we don’t get to choose to engage in that hobby all the time. Helping the person with autism learn where and when it is appropriate to engage in their passion is critical. Especially if the special interest isn’t necessarily age appropriate. For example, Joshua still loves owning the Thomas the Tank Engine trains. We’ve taught him that his interest in Thomas is fine, but needs to be part of his life at home, not at work or school. He can talk to us about Thomas, but other teenagers probably won’t want to discuss Thomas.

2. Collections Are Perfect Reward Systems.

(I don’t really need to explain this, do I?)

3. Teach a Variety of Conversation Topics.

Some individuals need to learn to discuss something other than their particular interest. A visual structure can frequently help support this learning. We used “talk tickets” to restrict the number of times that Spencer could talk about Transformers. Initially, Spencer had about 20 “tickets” that he could give us when he wanted to talk about Transformers. (Believe me, I was seriously tired of talking about Transformers!) Then we started to reduce the number of Transformer tickets and give him tickets on other topics we knew he could engage in. Eventually, he had only one Transformer ticket each day—and he frequently didn’t even use it!

CHAPTER 3

Eat, Drink, and Be Picky: Eating Issues

Nothing can make me feel more horrible about my parenting skills than seeing a Food Pyramid—you know, the poster that’s in every school building, cafeteria, and doctor’s office that indicates how much of each food group your body needs to grow and develop; the one that’s supposed to visually show you the inadequacy of what you’re feeding your children; the poster that doesn’t look anything like the diet of most humans! Because, seriously, who really eats 10-12 servings of vegetables or fruits each day? I know I don’t.

Our boys have always had food issues. I was always the mom who made different meals for everybody in my family because they wouldn’t eat the same thing. I even rationalized that ketchup really was a vegetable serving. I would bring our own food to family gatherings because my boys wouldn’t eat anything being served. I even lied to my pediatrician (and my mother-in-law!) about what I made for dinner. And I packed the same food in one of my son’s lunch bag for seven years because he wouldn’t eat anything in the cafeteria but Cheetos dipped in peanut butter.

As a young child, Spencer would eat only white food—bread, Cheerios, French fries, and waffles. Joshua would eat only crunchy, salty foods; and Zachary would eat Jack’s Frozen Pepperoni Pizza, Cheerios, and chicken nuggets ONLY from Burger King. They also wouldn’t eat cookies, ice cream, or chocolate, which should have made me ecstatic and pompous, but children who don’t eat chocolate? How does that happen?

I consulted a nutritionist numerous times over the course of the years. The first one told me to offer three healthy meals and snacks per day, and said that if the boys didn’t eat I should let them go hungry. She assured me that children will not starve themselves—the boys would eventually eat the food I prepared. So I stood firm with the offer-only-healthy-food advice and Spencer went FIVE days without eating, before I gave up and handed him a bowl of Cheerios! I just couldn’t handle my child looking like a war refugee.

I worked with another nutritionist who helped me create a visual system that would enable the boys to predict what food they would eat on different days. I spent days creating a consistent weekly menu (spaghetti on Monday, tacos on Tuesday, etc.). I built in rewards for each attempt at eating—a Thomas movie if Joshua would eat chicken; computer time for Spencer if he would drink a glass of water; a new train for Zach if he would eat a vegetable. I even used the colors of the rainbow to entice the boys into eating healthy foods. For example, if they ate a food that was a color on the rainbow every two days they would get a prize out of the prize box. Unfortunately, the visuals and rules were so complicated even an IRS agent wouldn’t have been able to understand them! The behavior program was a total failure. Worse yet, it cost me hours of time to create the visuals, and hundreds of dollars in rewards!

I have tried numerous other behavior plans, reward systems, and visual supports in my attempts to change the boys’ eating habits. The stress of constantly trying to get them to eat something healthy was intense. During one of the food management programs, Spencer told me, on an hourly basis, that I was “ruining his life.” Joshua screamed at me when I announced it was time for dinner, “You are an angry buffalo!” and Zachary would start hitting me. (Add to this the remarks from my husband!)

During one of my feeble attempts at changing his diet, Joshua wrote me the following note:

Dear Mom

I feel sad and lonely and no one loves me and they didn’t give me anything, they didn’t take me places everyday. If I don’t have soda, popcorn, fries, butter bread and more food, I’ll never make my days and holidays. Why do they care? Why? Does everyone don’t love me?

Write this: __________________________________

“Write this” was Joshua’s way of telling me he wanted a response in writing.

Dear Joshua, I love you very much. Everyone loves you. Because I love you, I want you to eat healthy foods. That’s why we are changing our foods at home. We will still have holidays. Change is hard, but eating healthy will make everyone feel better. I know that you can try to be happy about new, healthy foods like vegetables and meat.

Dear Mom,

I feel angry because I don’t want cheese in my snack and I don’t want green stuff and chop in my lunch.

Love Josh.

PS. It’s my birthday today, so no celery, no cheese, no chicken!

Cheeseburgers. Yes.

Cheese sandwiches. Yes.

Cheetosticks. Yes

Carrots. Yes

Cheerios. Yes

Food is such an intimate, cultural, emotional subject. Feeding our children is a critical need for all moms. When you add the emotional issue of wanting to give your child something—ANYTHING—that will make him happy, the challenge of feeding a child who eats only chicken nuggets and potato chips can be exhausting. And feeding them is so daily! I would feel frustrated and inadequate three times or more per day—every time I was supposed to be a “good mom” and feed them carrots and spinach. I was also embarrassed. I just knew that the teachers were talking about me in the lunchroom when they saw that Zachary’s lunch consisted of Froot Loops cereal, Tostito chips, and lemonade.

It’s not as if I’m a lousy cook—the irony is, I LOVE to cook! I am a Food Network junkie. I love to try new recipes, bake fancy desserts, and cook for parties. But I was a failure at enticing my children to try something new. They would scream and cry if a new food was even on the table, let alone near their plate.

I told myself that changing their eating habits didn’t have to be at the top of the intervention priority list. The boys were growing, rarely ill, and very active. But this was just rationalization and emotional survival on my part (of course, that’s not necessarily a bad thing!). A part of me empathized with them because I remember eating Cheerios every single morning for four years of high school! I didn’t eat a varied diet until I was in my twenties. How was I going to convince the boys that broccoli tasted great, when I hadn’t liked it until I was 26?

ACKNOWLEDGEMENTS

TABLE OF CONTENTS

FOREWORD

INTRODUCTION

“Hello, we have autism …”

PART I

Characteristics of Autism

CHAPTER 1

Foreshadowing: Early Signs of Autism

CHAPTER 2

The Gathering: Passions and Obsessions

CHAPTER 3

Eat, Drink, and Be Picky: Eating Issues