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In Their Own Words – Focusing on the “Cans”

June 27, 2010 6 comments

This “In Their Own Words” essay was submitted by Teresa Greenwood of Hays, Kansas, who has a daughter with autism.

This was my first celebration of World Autism Awareness Day. A year ago I didn’t know that April 2 was anything other than another day on the calendar.

Did I ever think about autism before my two-year-old daughter was diagnosed – no. Sure, I’d heard of it, and I sympathized with families that “had to deal” with a child with a disability. I did not know anyone with a child with autism, however. And I never would have thought it would affect my family, but it has.

Morgan’s diagnosis, and her progress since then, has changed my life for the better. I have more patience than ever before, and more understanding that we have to cherish every blessing we have. I am blessed to have Morgan in my life, and I would not change her in any way. Also, I am blessed with three other children who love their sister and embrace her diagnosis.

Of course, I grieve for the child she could have been without autism, but I also recognize the amazing child she is with it. When I drop her off at daycare and another two year old says “Hi, what’s your name?” I am reminded that Morgan only occasionally says “Momma” and mostly babbles without words. I know that she may never be fully verbal and will probably be in special education classes in school. The odds are she will never live independently. When she becomes excited or upset she will flap her arms uncontrollably. She easily becomes overwhelmed to where she has to drop to her knees and suck on her fingers. She is an extremely picky eater, like most people who have autism, and she has trouble sleeping at times. But I do not dwell on the “can’ts” and the “nevers.” I focus on the “cans.”

Morgan transformed from completely nonverbal with little eye contact to a bright child who babbles constantly. She will hold a pig and say “oink oink.” She will hold a cow and say “mooooo.” She also has a sheep, which says “baaaa.” She holds these animals to a toy hay bale to make them eat. She now waves bye-bye on occassion, and she has used some of the sign language she has learned. She will make a spider sign when she wants to sing “Itsy bitsy spider.” And she will pull her sisters’ hair if they get too close. She will run to her daddy when it is time to pray, and she will come crawl in bed with us in the middle of the night.

Morgan thrives in her therapy and learns quickly. And I can’t thank her therapists enough for taking the time to work with her, to help her become the person she was meant to be. Early intervention is key to successfully living with autism, and Morgan was fortunate enough to be able to experience that.

I watched a video of a speech by Temple Grandin, who has her doctorate’s degree and is a published author … and who also has autism. HBO recently made a movie about her, which I have yet to see. Watching the real Temple give a speech about her life with autism – and her successes since her diagnosis – gives me such hope that there is a place in this world for my daughter’s beautiful mind.

I sympathize with the people glaring at us in church because Morgan is holding her toy cow in the air and yelling “moooooo!” But I am not sorry, because to me there is not a more beautiful sound in the world than my autistic daughter finally finding her voice and saying words. Even if it’s barnyard talk.

On World Autism Awareness Day,  remember autism, and the millions of families affected by this spectrum disorder. Research is continuing so that hopefully, someday, more can be understood about this mystifying disabiliity. Until then, I will continue to grin at my daughter while she talks to her farm animals, being extremely proud of all she has accomplished at such a young age.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Finding the Right Words

June 26, 2010 8 comments

This “In Their Own Words” essay was written by Rose Wade. Rose has two children, including a son with autism. She is a military wife and the founder of The Robin Hood Lego Campaign Advocating Autism Awareness and Lego Therapy.

Our home is often held together by words both written and spoken. When my son first said “mama,” it brought tears of happiness to my eyes. There are words of encouragement and correction I’ll give to my children until I’m old and grey. Or older and greyer than I am now.

We’re a military family. My husband has been apart from us many times. From brief two-week temporary duty assignments, six-month deployments to Iraq and Afghanistan, and now a year-long remote tour in Korea.

The time allotted to him for moral calls to us is free, but brief. Our family has fifteen minutes to cling to each others’ voices. Every word spoken is precious. We save letters for birthday, anniversaries, and holiday cards. There are several, ribbon-tied envelopes from years of correspondence tucked away in the closet.

My 12-year-old son, Matthew, was diagnosed with high-functioning autism. Though I still haven’t been able to encourage him to write a letter to his father, I love every minute of listening to him chatting on the webcam during the few instances when my husband can be away from duty.

Matthew will talk endlessly on several subjects and they’ll all string together. One word or phrase will remind him of something else he saw or learned, and the talking will continue.

His talking is also filled with questions. I never know where I’ll be, or what I’ll be doing when I’ll be asked a question about the formation of the sun, and two seconds later be asked why the mail doesn’t run on Sundays.

I do what I can to keep up with the questions. I’ve had to search my own ‘files’ for the appropriate answers. I’ve often had to reply “I’m not sure.” It’s a good thing I’m not a contestant on ‘Jeopardy’. I’d owe money to Alex Trebek.

My 10-year-old daughter, Kayli, asked Matthew why he’s always so talkative in the car. I didn’t notice it myself until she pointed it out. While I’m driving and answering Matthew’s questions, I must look like I’m talking to myself or singing with the radio. So far, I haven’t been pulled over by the security forces on base because they thought I’ve been on a cell phone.

Matthew speaks often. Sometimes it wears on my patience, but I do my best to give him answers even if I have to often gently remind him that he had asked me the same questions yesterday. He’s talkative, but I wonder how many of my responses are getting through to him. I’ve spoken to him about several subjects, several times. But I know I’ll be asked again next week.

Thanks to the inspiration of a talented man, I found a passion for creative writing. It has given me a new creative outlet that helps me cope with my brave husband’s long absences that leave me to deal with daily fears about his safety, my darling son with autism, my social butterfly daughter, and household appliances that only cause trouble while my husband is away.

Inspiration was given to me again, by the same talented man, and led me to start The Robin Hood Lego Campaign Advocating For Autism Awareness & Lego Therapy. My writing has found another, important outlet. My hope for the campaign is to educate others about autism by expressing my experiences with a child on the spectrum.

My son has high-functioning autism. He comes with his own challenges and triumphs. There are children across the varied autism spectrum, each with has loved ones who search for ways to cope with the effects of autism on the child, and on the family.

Sometimes words are too repetitive, too harsh, not clear enough, filled with impatience. Sometimes the right words are simply missing.

I worried over my first blog post about autism entitled “How Would You Know If a Fish Had Autism?” Would people want to read it? Would they understand my point-of-view?

The blog post received comments from mothers of children with autism, paraeducators, and adults with autism. Their heartfelt words touched my own heart and reminded me not to give up my campaign to raise awareness of autism and its effects on families.

I listen to the words and questions spoken by my son and I learn more every day about him, and about autism. Just like my son’s words to me, the words I share with others about autism may not always be the right ones, or understood, or relatable to everyone, but they will always come from the heart.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

How Technology Can Improve the Future for My Daughter

June 24, 2010 22 comments

This guest post is by Susan Schober. Susan is a 4th year Ph.D. Electrical Engineering-Electrophysics student at the University of Southern California (USC) Viterbi School of Engineering and a mother to a young daughter with autism.

Eva and I

I was searching for answers to my questions.  Will she ever speak?  Will she have a normal life?  What can I do to help?  What caused this thing called autism? What about her future? I read tons of books and searched the internet for some kind of direction. I felt totally lost. Helpless. Confused. Sad. I was even embarrassed to tell people. In fact, only people I absolutely trusted knew my secret: my three-and-a-half-year-old daughter, Eva, was diagnosed with non-verbal autism.

After Eva’s first birthday, which was filled with presents, laughter, and friends, she came down with a fever that lasted for two weeks. Her words and eye contact left at this time, never to return. Her big beautiful brown eyes developed a glassed-over look. Where was the little girl with the rosy cheeks that smiled and giggled constantly? All that remained was an unresponsive child that stared at our ceiling fans or at the leaves blowing in the trees. She acquired weird habits like her love of collecting anything plastic, especially gift and credit cards. More recently, she became obsessed with computers and anything electronic.

Her current fascination is fine with me though, as I myself am a Ph.D. Student in Electrical Engineering (EE) at the University of Southern California (USC). At USC, I am completing my doctorate in Ultra-Low Power Radio Frequency/Analog Integrated Circuit Design.

The Diagnosis

One of the first challenges occurred when Eva was one and a half years old.  She was referred by the Regional Center of Orange County to OCKids for a diagnosis. It was pure luck that Eva was to see Dr. Pauline Filipek, who is a specialist in autism spectrum disorders (ASD). Dr. Filipek’s nurse, Teri Book, who would eventually become a great friend, was in charge of scheduling the barrage of tests – which including blood work, EEGs, EKGs, hearing, vision, ultrasound for gastrointestinal issues, and genetics – that followed to get a more accurate picture of what was going on. The official diagnosis came in a 40-page report a few months later. I read it over and over with tears in my eyes.

Eva’s Early Start program started soon after. Her therapies included physical, speech/language, Occupational Therapy (OT), and Applied Behavioral Analysis (ABA).  My mom would always joke that Eva had a full-time job as her work schedule would last 25-30 hours a week, on average.  It was hard seeing her frustrated, but we stuck with the program.  She slowly learned basic sign language and worked with the PECS (Picture Exchange Communication System) to organize her daily activities.

On one of her follow-up appointments with Dr. Filipek, the doctor tried to get Eva to look in her eyes. This was no easy task. However, Filipek would not give up and finally Eva gave in.  Eva looked in Dr. Filipek’s eyes for a brief second, and cracked a big smile—the first smile in a year. I almost fell out of my chair. Dr. Filipek whipped around and looked me square in the eyes and said, “There IS a little girl in there wanting to get out. It is OUR job to help her.” That was all the fuel I needed to start my quest to find a way to help Eva overcome autism.

The Class

It was by chance that I met Professor Olga Solomon and found that USC had a wide variety of research interests in helping those with ASD. That chance came in September 2009 in the form of an email forwarded to the Electrical Engineering Department at USC’s Viterbi School of Engineering where I study. That email was titled: “SEMINAR: Enhancing and Accelerating the Pace of Autism Research and Treatment: The Promise of Developing Innovative Technology by Matthew Goodwin.” When I received that email, I did a double take. It was addressed to my USC account and it said the word “autism.” I thought by accident I had gotten one of my many autism related newsletters or therapist’s emails in the wrong account for some reason.  But when I read it for the third time, I realized that yes, there was a scientist coming to USC to speak about integrating engineering techniques into research on autism.  I thought it so strange and beautiful. I had to go.

At the end of this eye-opening seminar, Dr. Solomon announced that she would teach a class in the Spring 2010 semester titled “Innovative Technology for Autism Spectrum Disorders” funded by Autism Speaks. The course would unite the fields of engineering, occupational science, neuroscience, psychology, anthropology to give a full view of the technological advances in the world of ASD.  Every week, the students would read articles about ASD science and technology, blog about the readings, and invite the authors to present their research in the class. The course was too good to be true.  I believe I was the first person to sign up.

The students came from a mix of backgrounds, including engineering, computer science, and occupational therapists.  I struggled with being open about the fact that I was a mom of a daughter with autism.  When it was my turn, I blurted it out.  This was the first time I had ever told people I did not know about Eva’s autism and it was therapeutic. This small action opened the door for me to use my engineering background coupled with the knowledge that comes with being a parent of a child with ASD. I was so happy; I was not embarrassed anymore. I was here because of my unique experience and my desire to help and to find answers and solutions.

The first few weeks were dedicated to making sure the students had a strong foothold in what ASD was and what current methods exist to aid those with autism. The first speaker was Portia Iverson and we read about her experiences raising her son with autism through an excerpt from her book “Strange Son.” I was so touched by the passage that I wrote in my blog that I was going to buy the book and finish reading it.. The class day came and I received the most touching gift: Dr. Solomon obtained a copy of the book and had Portia sign it for me personally. I read the book in two days.

Each week following the first, the class had wonderful speakers; these included my favorites: Shri Narayanan – a well known Electrical Engineer who deals with speech and signal processing techniques, Skip Rizzo – a Virtual Reality (VR) guru, and Gillian Hayes, who works in pervasive computing for ASD.  After each talk, I made every effort to speak with the lecturers in order to ask questions and broaden my knowledge. Most importantly, I wanted to say “thank you” and shake their hands. I had such an overwhelming feeling that in order to solve the puzzle of autism, every approach, story, and effort was an important  piece to be considered in the autism equation.

At the end of the semester we worked in teams with mixed backgrounds to develop an innovative idea to apply to the field of autism. My group’s project was to develop an interactive VR and pervasive computing program to help diagnose children with autism living in rural areas where there are not enough resources or doctors on-site to make a diagnosis. We collectively wrote a grant proposal which, if accepted and funded, could be applied to disaster areas like that of Hurricane Katrina or Haiti. Using technology such as video and wireless sensors to gather data (including heart rate, sound, and body movement), the VR system could be set up in a remote area and used by a doctor or trained therapist at another location to make an initial assessment for a child suspected of having autism.  This, in turn, would allow that child to receive an accurate diagnosis, including a recommendation for therapy or medical attention as needed. Not all families are as lucky as I was to live in an area with access to top doctors, therapists, and research facilities dedicated to autism. Hopefully, with a portable system like the one proposed, costs, such as travel expenses and doctor fees, can be greatly reduced and children suspected of having ASD can receive effective treatment quickly.

Looking Forward

Now that the class is over, I can look back and confidently say I am so grateful for the experience and connections I have made though the semester.  The autism technology course has opened a whole new world for me. I signed up for the class because it intrigued me for the obvious reasons.  I wanted to know more about autism and what was out there that could possibly help heal my daughter.  What Dr. Solomon’s course gave me was a basic, yet solid understanding of autism and a way in which I could personally contribute my engineering skills and unique background to forming innovative technologies to improve the lives of individuals with ASD.  Looking forward, I would love to continue to further my research in ASD technologies using both my insight as an engineer and a mom of a child with autism.

In Their Own Words – A Little Secret

June 24, 2010 15 comments

Ethan, I still love you …

Today was a pretty rough day for you, Ethan. It was for me, too.

It was hard for me to pick you up and carry you to the van with the other kids. I know it’s not what you wanted, but I didn’t want you to hurt yourself or someone else during the behavior you started to have.

I know there are times you don’t understand why things happen as they do. You don’t understand yet, because you’re only six! I hope that one day you’ll realize that the choices I have to make are to help you as you grow up.

When I see you scrunch your nose and raise your small fist, I can see you want to communicate with me, but simply aren’t sure how to do it. I try hard to keep you calm and ask what’s upsetting you, but sometimes that doesn’t work either. I hope you know I’m trying my best to be the mom you need. I’m pretty sure you see it, too. Your hugs and kisses tell me so. When I mess up, you even tell me it’s okay, and I can try again! I love when you tell me its okay to mess up, because I’m not perfect either. Sometimes I get frustrated, too, and say or do things I shouldn’t. That’s why I always come back and tell you I’m sorry when I mess up. I know you’re a very forgiving boy and that you’ll still love me too. When you tell me it’s okay, it makes my heart smile, because I see what a great and wonderful boy you’re growing up to be!

In the van, you screamed so many terrible things that you think about yourself. It made me sad to hear it. I wanted to cry when I heard you screaming such horrible things about yourself. It really hurt to hear how upset you were in school, and that you scratched your face so much. I wish I could have been there to talk with you, and make everything okay again.

I guess this is a part of life where you have to try finding new ways to handle a situation you don’t like. I don’t like hearing that you were hurting yourself again. I think you’re so special, Ethan!

You’re so smart, loving, caring, and everyone tells me how much they love you, too. You’re such an amazing little boy, even if you don’t see it yet. I see it, and I believe in you!

You said you hate yourself, even called yourself stupid and dumb. Ethan, I wish you could see yourself through my eyes. I love you during the good times, and even more during not so good times. I love you even when you call me names, and I still love you when you’re hitting me. I love you when you’re punching and kicking me, and I still love you when you try to bite me. I even love you when you scream that you hate me and then spit all over my face. I love you because God gave you to me. He knew that you were perfect for me before you were ever born. You have taught me to be patient, to listen closely, stay calm, and pray for direction when I can’t do it on my own. You taught me that I am a strong woman who can love more and more each day. You also taught me how to laugh and laugh, even on days I feel sad or grumpy. Your little laugh is contagious, and your eyes glimmer like the sunshine on a calm lake. You taught me not to take things for granted, like a hug, or kiss on the cheek, or our good night routine full of giggles. I want to thank you for teaching me so much Ethan. Without you in my life, I wouldn’t be the mom that Cheyanne, you and Isaac need. You don’t know it yet, but you’re teaching me more than I’m teaching you!

I think you’re one of the most amazing little boys a mother could ever have! I know there are times when you get frustrated and upset. I would too, if I had to deal with the same challenges you face every day. Life is hard enough without all the extra obstacles put in your way. It’s hard for grown ups, and we don’t have as many challenges as you do. You have been doing so great handling all the changes in your life. I know they’re not easy to deal with either. This is another reason you’re such an amazing young boy!

I want you to know a little secret, Ethan – there is nothing in this world that you can do or say to me, that will ever make me love you less. Nothing!

When you’re upset or feel less than great about yourself, I’m still here to hold you in my arms, and tell you just how special you really are. That’s one of the best parts of being a mom! You can tell me all your secrets, and they’ll be safe with me. I won’t ever love you less, but I can PROMISE that I will ALWAYS LOVE YOU MORE!

Ethan, having Asperger Syndrome doesn’t define who you are as a person in this world; no, not at all. It is you that defines who you are as a person. It is you who defines how amazing a person with Asperger Syndrome can be!

You are my son, and I love you more than life!

When others try to make you feel bad about yourself, and there will be some who try, you remind them that you’re a child of God! Remind them that in His eyes and mom’s, you are wonderful! You need to remind yourself of this, too, when you feel upset. The more you remember these things I tell you, the less people will be able to hurt you with mean words.

I can’t wait to see what an amazing man you will become. It makes my heart fill with joy, and my tummy feel like there are butterflies in it! I’m so proud to call you my son, Ethan. I’m so thankful God chose me to be your mom, because no one else could love you as much as me!

“I’ll love you always and forever!” has taken on a whole new meaning in my heart because of you. I am blessed to say, “God gave you to me!” I love you!

This “In Their Own Words” essay was written by Jolene, the mother of a son who has autism.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Silent Language of Love

On Monday afternoons, Ethan, our ten-year-old with autism, attends a gymnastics class with eight other children who have a range of different special needs. Today has been a hard day for Ethan—there’s a note from school referring vaguely to “an incident at the computers” and later, a refusal to do any math at all. I’m poised in the lobby by the window that offers a little view of the class, ready for the worst—a blow-up, a melt-down, something—and instead I watch Ethan blink with surprise at a new girl walking into class. Taller than him by at least five inches, she has striking red hair, glasses, and Down’s syndrome. Right away, I can see that, for whatever reason, she has captured his interest. He flutters closer and examines her from different angles, a technique he usually reserves for particularly interesting machines. As they move through their warm-up routine, he positions himself as close to her as possible. A few minutes later, they are partnered to run through some somersaults and cartwheels together.

If I were in the room with them, I’d be barking directions and prompting conversations because I’m his mother and can’t help myself: “Ask her what her name is!” “Tell her yours!” “Find out what school she goes to!” In my heart of hearts, I know he’d probably do as he was told and, I suspect, the interest would die because pushing him into the realm of ordinary conversation has never interested him.

Instead, as she cartwheels, Ethan squeals with laughter, bounces up and down, and then turns serious: “Nice cartwheel,” he says, staring at her feet.

For Ethan, language is a perpetual stumbling block. Asking a question is a dangerous invitation to getting a question asked back, to launching in on the exhausting business of talking back and forth. Recently, though, he’s learned that compliments serve nicely as predictable and brief conversation starters.

“Thank you,” the girl says, nodding and readjusting her glasses.

Usually an exchange like this would do the trick for Ethan and be enough bonding for one day. He’d go off and find a heating vent or a light switch to examine close-up. But today, he stays with the girl, and—I can hardly believe it—never takes his eyes off her.

For the rest of the class they say nothing, but stay in each other’s vicinity. There’s a thumbs up at some point and even, when they get to the trampoline, a smile from her. At the end of class, they are meant to shake hands with their teachers, which Ethan usually does, but today he skips past his teachers to poke his hand out in the direction of his new crush. For a horribly long moment, it hangs there, hovering in the air between them. I send up a silent prayer: let her shake his hand, let her do something. Though he’d probably make a speedy recovery, I fear my heart will break if she doesn’t.

Then she surprises everyone: she looks down at both her hands, chooses the wrong one and gives it to him. As the room empties around them, suddenly they are standing side by side, holding hands, looking—more than anything else—stuck.

Is this terribly awkward? Are they dying of embarrassment? The woman who must be her mother and I exchange glances. Should we sail in and fill this silent tableau with our chatter and the exchange of names? Because she holds back, I do too and eventually they manage to end the moment themselves. Ethan notices a light switch he hasn’t flicked today; she spots her shoes, two ruby-red slippers to match her hair.

After it’s all over, Ethan says only this: “I liked that girl.”

Why, I wonder. Why did my son, who is afraid of new people, who needs to be prompted to notice other kids, take such a shine to her? I can only think he must recognize something in her face about what they share—that he knows, instinctively, the world is hard for her, too.

I’m still thinking about this scene the next morning at the bus stop. In our struggle to help Ethan gain speech, we have tried virtually everything that books have offered us. He’s got some sign language, enough that any time we yell, his hand fly up to his chest and beat out I LOVE YOU over and over. We make him ask questions, two of us at every dinner, two of his brothers; we prompt him through stories, start his words for him. We have forced Ethan to talk every single day and though I’m sure this was right, I also wonder if we haven’t learned something ourselves from his reticence.

When you don’t talk much, there are many things you also don’t do: you don’t make up stories, you don’t lie, you don’t exaggerate the truth to make everyone laugh and/or feel sorry for you. You also don’t manipulate, or bore people without realizing it. I’ve spent years being jealous of parents with chatty children until I got one myself and realized: Ah yes, some children do go on and on, in a way that isn’t always dreamy.

At the bus stop, Ethan’s two younger brothers are infinitely smoother than he. One chats up another mother with a story of closet monster, the other chucks sticks on a roof with his friend from up the street. Ethan as always, stands alone, humming, with a nervous eye on the horizon for the bus. Though he never talks at the bus stop—there’s too much to do, watching for the bus—he’s recently started a new practice of hugging the other mother and me as the bus pulls up. Usually he whispers what we should say before we can: “Have a good day, Ethan.”

It’s inappropriate, no doubt, and something we should probably discourage before he gets to middle school, but for now, the other mom loves it and smiles afterward. And there’s also this; our blissfully typical six-year-old says goodbye by chucking me his stick form the bus steps and calling, “Hold onto that until I get home.”

We have learned that silence is a cloud with its own silver lining. What Ethan manages to communicate in his odd ways—in his gestures, in holding hands with that girl, in his morning hugs—can seem, at times, truer than a half-hour of his brother’s nightly laments about playground popularity. Is Ethan bonded to others? Does he communicate his feelings? Sometimes I think that in the absence of easy access to words, there’s a way he says the real things better than the rest of us.

This “In Their Own Words” essay is written by Cammie McGovern and was originally published on AutismSpeaks.org.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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