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Voices of Autism: A brother’s perspective

November 8, 2011 127 comments

This blog post is by Andy Shumaker. His brother Matthew has autism. Andy is a graduate of Yale University.

My brother doesn’t like me very much, and I don’t blame him.

It’s not that I’m a bad person, or that I don’t treat him nicely. It’s not that he’s unfriendly. I think it’s just hard to like someone who’s a lot luckier than you are.

Matthew was born a couple of years before I was, but somewhere along the way I became the older brother. I think I started speaking more than he did early on, not that we cared at the time. But as we grew older, the milestones started to matter.

The driver’s license was a big one. In east bay suburbia, it’s a given that on your 16th birthday you go to the DMV and take the test. It’s all you talk about when you’re a sophomore in high school, and when Matthew was that age, he probably heard about it every day when he walked alone through the halls.

He would talk to my mom about how excited he was to get his license; she would try to disabuse him of this illusory desire as gently as possible. But he was adamant. He wrote his name in Sharpie on my mom’s license plate. One time he got in her car and, instead of backing out of the garage, put it in drive and drove through the wall.

I, the neurotypical one, got my driver’s license on my 16th birthday, when Matthew was 18. According to Matthew, though, I wasn’t allowed to drive. I was younger than he was, so it made no sense for me to have rights that he didn’t.

When I needed to drive somewhere and Matthew was at home, my parents would have to drop me off at the end of our street before walking back home.

Matthew knew what was up, and he would give me a stern warning about the dangers of driving the next day. Whenever he caught me trying to sneak out of the garage, he would run out and scream at me.

Things have changed since then. After he got over the screaming thing, he displaced the driving ban onto Michael, our next-door neighbor who is Matthew’s age. This went on for a few years– when he saw me driving, I would have to roll down the window, and he would tell me that Michael wasn’t allowed to drive, to which I would always agree before going on my way. Today, after seven years, I’m allowed to drive, but not if he’s in the car.

Matthew can drive, if he feels like it. My dad drives him to the parking lot of the church near our house. Then they switch seats, Matthew drives in circles, and my dad’s hand rests on the emergency brake.

But it’s not just about the car. Matthew and I don’t really get along when we’re around the house, and I think it all has to do with jealousy.

I am very lucky.<Matthew knows that I have no trouble making friends, and he knows that I have a girlfriend. He knows that I’m more independent than he is, and that I go to college.

Sometimes I accidentally beat him when we play video games together.

If I enter the room when he’s not in the mood to see me, he comically turns and shields me from his presence, essentially giving me the most literal version of the “cold shoulder” I have ever seen. I’m not allowed to pat him on the back without permission. When he apologizes to me or says something nice to me, it’s usually because my parents have made him do it.

The good news is that things are getting better all the time. The breakthroughs are gratifying.

Our most recent visit to my grandfather’s house in Carmel was a big one.

I got back from the beach a half hour before we were supposed to drive home. Matthew was sulking on Grandpa’s bed, and I asked him what was up.

“I really want to go to the candy shop all by myself but my mother won’t let me,” he said. There is a little shop on Ocean Avenue where Matthew likes to buy jelly beans.

“Well, why don’t we go together?” I ventured.

“I don’t know,” he said hesitantly.

“Come on, let’s go.” I said it forcefully. Matthew sighed.

“OK.”

He must have really wanted those jelly beans.

So we set off down the street toward Ocean Avenue. He even tried out some conversation starters that I hadn’t heard before.

“So, how’s it goin’?” he asked in a rather nuanced, jocular tone.

I told him it was goin’ great. Told him I went swimming in the ocean.

“It must have been cold!” he said.

After our first few exchanges, the trip to the candy shop was pretty quiet. Matthew likes to think when he walks. I like to think that he was thinking, among other things, about jelly beans, and about how his younger brother isn’t so bad after all.

The trip to the candy shop was a good breakthrough, and when you have a less-than-satisfactory relationship with your autistic older brother, you take what you can get. I think it will keep getting better as we grow older, and I hope his jealousy will fade in some ways.

Like I said, I don’t blame him if he doesn’t like me. It’s hard to like someone who’s a lot luckier than you are.

I just hope that some day, he realizes that one of the luckiest things that happened to me was him.

Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

The Year that Jack Bauer Saved our Summer

September 11, 2010 3 comments

This guest post is by Laura Shumaker. Laura is the author of “A REGULAR GUY: GROWING UP WITH AUTISM.” Join the discussion about her book on Facebook.

It was July 30, 2006, and the first day of relief from a record breaking heat wave in the San Francisco Bay Area. I stood anxiously by the escalator at the Oakland Airport waiting for my twenty-year-old son Matthew to arrive from Pennsylvania. Matthew is autistic and had been attending a special residential school there since he was 15.

He would be home for a five-week break. Worried that he would be lonely and adrift as in summers past, I hired a companion who worked at his school to fly Matthew home and stay with us for three weeks.

His name was Kim, a twenty-five-year old from South Korea who had joined the staff of Matthew’s school just a year earlier. I had heard good things about Kim, but was nervous because our communication through phone and email, though cheerful, had been awkward. His English was difficult to understand, and I wasn’t sure he understood the notion of “friend to hang out with” rather than “policeman”. Matthew was painfully aware of his disability and need for support, but despite his innate social ineptitude, he craved independence and friendship, and wanted to be viewed by the world as a regular twenty-year-old.

In the past when I had hired “friends” for Matthew, I’d had the benefit of meeting them first in person to see if the chemistry was right. When Kim and Matthew came into view at the top of the escalator, I saw no chemistry. My son, wearing a t-shirt, shorts and sandals, rushed ahead of his smiling companion.

“I’m not with him,” said Matthew, frowning in earnest. “I don’t need a babysitter.”

“He’s not a babysitter,” I said, shaking hands with the stranger in front of me, “Kim is our friend!” Matthew rushed ahead to the baggage claim. “Did you have a nice flight?” I asked Kim, who shrugged and smiled.

It’s gonna be a long three weeks.

The first few days of the visit Matthew avoided Kim, and my husband and I and our other two teenage sons tried manically to make Kim feel useful and at home, talking to him, struggling to understand his English, inviting him for walks and meals, and asking him to help with the dishes. By the third day, I was exhausted from smiling, talking, and suggesting activities for Matthew and Kim that fell flat.

“Do you want to go to the movies with Kim, Matthew?”

“No”

“How about a hike?”

“No hikes.”

Feeling like a prisoner in my own home, I left Matthew and Kim alone together while I took our four-month-old Labrador puppy, Cali, for a walk. When I returned, there was a police car in the driveway.

“He’s stalking me!” Matthew was telling the policewoman who had responded to his 911 call. Kim smiled nervously and paced around, and the officer looked confused. I explained the situation and apologized profusely. She said she thought she’d seen everything till today.

“Look, Matthew,” I sighed, “Kim is our friend. Will you please be nice to him?”

“Probably not,” was his response.

There was no way I could endure this kind of grief for three weeks, and I wondered if I should just pay Matthew’s friend for hire the full amount that I had promised him and put him on a plane back to Pennsylvania. But then I glanced at Kim who was stroking the puppy, and I could see he was a person who smiled even when he was hurt. Somehow I had to make his visit a successful one.

“Matthew has some yard work to do,” I said. “Could you do me a big favor and wear this puppy out?”

Kim nodded eagerly, and the two fled to a walking path around the corner. Later that evening, Kim took Cali for another walk, and came home looking exhilarated. Did we have any movies he could watch on his laptop, he asked? As I was reaching for The Sound of Music, my thirteen year old handed him the first season of “24″, a cult show among teenagers about the dangerous adventures of no-nonsense counter-terrorist agent Jack Bauer. The next morning Kim slept in, and admitted sheepishly that he had been up half the night watching the series.

“That’s OK,” said my thirteen-year-old, “We’re addicted, too!”

By the fifth day of his visit, Kim had settled into a happy routine of dog care and other chores, amiable family dinners and evenings with “24″. On day six, a Saturday, Matthew knocked on Kim’s door, and asked him if he wanted to walk downtown and get some pizza.

“I decided that I might like Kim,” said Matthew when they returned, and I heaved a sigh of relief, grateful that the web of reverse psychology that I had woven out of desperation snagged Matthew. I stopped counting the days until Kim’s departure, as the two bonded over daily walks downtown.

The morning of Kim’s departure, Matthew told him not to be sad-he’d see him in September. But Kim had a hard time saying goodbye to Cali, and knelt down to cuddle her one last time. He was still smiling, but I saw a tear cascade onto the puppy’s shiny coat.

“You are going to miss uncle Kim, aren’t you Cali? Let’s take your picture with him.” As Kim grinned for the camera, I was grateful that the painful scene at the airport three weeks earlier had unfolded so magically. It seemed that by turning our constant focus from our autistic son to the needs of our houseguest, Matthew was free to befriend his friend for hire in his own time and in is own way.

The next morning, an email message from Kim arrived. It remains on our refrigerator along with his picture with Cali.

So much thank you for you, and family, and my niece Cali.
It was a great 3 weeks for me….my best summer in life.
Thanks a lot for giving me such a nice memory.

Kim

“A Regular Guy: Growing Up With Autism” – An Adult with Autism’s Take

August 5, 2010 1 comment

Two Autism Speaks employees, Ali Dyer and Kerry Magro, recently read Laura Shumaker’s book, “A Regular Guy: Growing up with Autism.” Each wrote a response to the book, unique to his/her relationship with autism. Ali has an adult brother with autism; Kerry, an adult with autism, is a rising senior at Seton Hall University, majoring in Sports Management. Below is Kerry’s response to the book.

This week I had the pleasure of reading Laura Shumaker’s book “A Regular Guy: Growing Up with Autism.” The book gives her perspective about her son Matthew’s journey from early childhood into adulthood with autism.

Before going into the book, I just wanted to say I admire what Laura has been doing to help families with children on the spectrum. I first learned about Laura’s book after she commented about one of my earlier blogs about the Autism Speaks 400 race. It was really great to see that all of this was able to come together.

The best way to describe the book would be a rollercoaster of good times and “learning” times for The Shumaker family. The one main thing that is clear, though, is the loving bond of a mother and family doing everything they can to make sure their son grows up to be okay. Whether it is early on where she is desperately looking for that special “Miracle Cure” or when Matthew gets older and it’s more about accepting him as who he is. This book gives you the whole insight to a mother’s struggle everyday with a child with autism.

Many parents look for answers and Laura’s book is sure to connect with parents with children on the spectrum as it goes through different diagnoses of ASD, school placement, family life, money complications, stress levels, babysitting options, and unforeseen struggles that come often come out of nowhere.

Being diagnosed with autism, I gained a great respect for different individuals with ASD from reading this book. As a young adult on the spectrum it makes me want to learn more about how my early childhood compares to Matthew’s.  It also made me continue to understand that no one diagnosis is the same. Every diagnosis has a different rarity from individual to individual. There are thousands of treatments, yet not one cure.

What we can take from this book in the end, however, is that no one is alone and there is always someone to be there for you – whether it is Autism Speaks’ Family Services, an autism helpline, or even a brilliant author like Laura. Growing up with autism should be an experience of understanding and learning.

(And hey, no one is really “regular” anyway, right?)

Did you read Ali’s post yesterday? If you missed it, you can check it out here.


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“A Regular Guy: Growing Up With Autism” – A Sister’s Take

August 4, 2010 20 comments

Two Autism Speaks employees, Ali Dyer and Kerry Magro, recently read Laura Shumaker’s book, “A Regular Guy: Growing up with Autism.” Each wrote a response to the book, unique to his/her relationship with autism. Ali has an adult brother with autism; Kerry is an adult with autism. Below is Ali’s response to the book – stay tuned for Kerry’s blog post tomorrow.

Ali and her brother, Jeff

When I was approached to read “A Regular Guy: Growing Up With Autism” and write a blog post from a sibling’s perspective, I was game. Shumaker shares her “family’s story of love and acceptance” in raising her son Matthew. I thought about the last book I read based on this subject. It was a children’s book and I was probably seven. My family always joked that we should write a book about our journey, and pick from the arsenal of stories from over the years. Oh well, I figured; let’s get reading.

I couldn’t put the book down. I got it. I found myself scribbling in the margins, highlighting and starring paragraphs and phrases, while I flipped through the tear-stained pages. My big brother Jeff is 25 years old and has been the focal point of my family’s life. He is inspiring to me and I adore him. Laura Shumaker’s honest portrayal of her life with autism resonates so much with my own.

She breaks up her story into three sections: “Beginnings,” “Navigating Childhood” and the “Road to the Future.” When Shumaker recalls her bout in finding some sort of diagnosis, I see my parents. After jumping from specialist to specialist, all weighing in with different viewpoints and recommendations, a young doctor wearing acid-wash jeans confidently diagnosed autism; as if it was a no-brainer. Having no idea, in 1987, what autism was, and nervous about the unknown life that lay ahead, my parents marched on. They vowed to do everything in their power to give our family the best life possible. As a courtesy to them, I don’t wear acid-wash.

I respect Laura Shumaker for sharing both good and bad experiences of her other two sons. I too, have experienced painful comments and taunts about my brother, even to this day. Just recently, in an upscale Hamptons restaurant I fielded remarks from two grown women in the ladies room. It hurts as much today as it did during recess in middle school. I can share with her two sons the conflicted emotions of having a brother with autism. Always, though my love, respect, and admiration win out for Jeff. I have another “normal” brother, and we have an understanding of one another and I will be forever thankful to have someone to share this with.

Shumaker also tells some embarrassing experiences that you just can’t help but laugh about. Matthew was honest – painfully honest. She tells a story, which was featured on the Autism Speaks Blog, about bringing in a babysitter who also happened to be overweight. Matthew couldn’t drop it, and so that story goes. My brother Jeff is always good for pointing out if you need to dye you hair to cover your roots, as well as unsightly scars, and wrinkles. He has expressed his desire for me to get Botox at the ripe age of 23. How rude.

Daily activities, for a family with autism, can be a great and strenuous adventure. While recalling a trip to church for a Family Worship Sunday, they had a share of surprises; I can’t help but laugh and remember. Our family never dared bringing Jeff to church unless we were prepared with the essentials – a pad and paper or his trusty Magnadoodle. Our lovely church always had a candlelight vigil the night of Christmas Eve. We always strategically planned to sit in a pew near the firefighters in case we had an “issue.” On one particular Christmas Eve, we had run out of paper (rookie mistake) and Jeff began to connect the dots on the polka-dot dress of a woman in front of us. She took it well. ‘Tis the season to be jolly, I guess!

Recently, our family moved Jeffery into a group home. My parents had prepared for awhile, but we just kept procrastinating. It seemed that the move-in date really snuck up on us. The agency Jeff has been with his entire life set up the most beautiful home. They really didn’t miss a trick and we will be eternally grateful. It is literally five minutes from our house, but we felt that it may as well be in Egypt.

Almost 20 years ago, we found three other families in our same boat. We call ourselves “The Lucky Ones,” and it is really true. How lucky we are, to have found an instant support group, that we can weather the storm together. Through the years, we have laughed and cried, and met many angels along the way that made life a little brighter, in times of darkness. I don’t know how we would have made it through without each other. On moving day, the men who have autism, who we will forever refer to as “the boys,” followed each other around like little ducklings. As hard as it was, leaving their home, we knew it was the best thing for everyone. Jeff has been there for about a month and is thriving.

When speaking of her two other sons, she says they, “came together in laughter and in sorrow, and they were left feeling the weight of their family’s bittersweet burden.” My brother Tom and I recently took Jeff out to dinner while my parents were away, and I couldn’t help but get emotional. I was thinking about our future together. How could I ever really move far away? Will we be able to hold everything together, as my parents have all these years? Shumaker put my own emotions so eloquently. The future will always be unsure, but I don’t for a second think Jeff is a burden. He is the purest and greatest blessing in my life. My brother made me who I am.

“A Regular Guy: Growing Up With Autism” sent me in a time machine, one that I would travel through again and again. I would like to thank Laura Shumaker for her honesty and for sharing her family with the world.

To check out Kerry Magro’s post on “A Regular Guy : Growing Up With Autism” read here.

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Don’t Tell Mom the Babysitter’s Fat

July 29, 2010 33 comments

This guest post is by Laura Shumaker. Laura is the author of “A REGULAR GUY: GROWING UP WITH AUTISM.” Join the discussion about her book on Facebook.

I needed a babysitter, and I was at a loss.

At the time, my three boys were eight, six, and one and a half. Finding a sitter for three young children is not easy under the best of circumstances, but since our oldest Matthew has autism finding help was always a tremendous challenge.

Our usual choice was Rocky, my friend Laurie’s fourteen-year-old son. He was a great kid who handled Matthew’s odd behavior with humor, and was loved by all three of my boys. I knew that if he were in a pickle, he could call his mom for advice or rescue, but he never needed to.

My husband and I had an all day company party to go to, and since Rocky wasn’t available, I asked his mom if she knew anyone else who might be able to handle our quirky crew.

She said she’d ask Anna, a friend of hers who had just moved from England to be a nanny for a family in our community. Anna had worked at a school back home for disabled children and was looking for work on her days off.

Jackpot.

I phoned Anna, and explained our situation. She bubbled back with her amazing qualifications, including a special education teaching credential and CPR certification. She had decided to take a year off to be a nanny in the United States and was interested in finding babysitting jobs on the weekends. I immediately had fantasies of a weekend away, which we badly needed, while this perfect person took care of the kids.

Saturday arrived, and I was polishing the kitchen feverishly having spent a better part of the day cleaning the house to impress the English nanny when the doorbell rang.

I pulled the door open, and there stood Anna with a big smile, beautiful blue eyes, dangly earrings and — 100 extra pounds.

Matthew appeared in front of her, and got right down to business.

“How big are you?”

“Matthew!” I said, horrified, but not surprised.

Anna seemed unfazed.

“Hello, Matthew. I’m Anna! Would you like to show me your room?” By now, Andy and John, Matthew’s younger brothers, were standing behind me, looking worried.

“How big are you?” Matthew repeated. I was about to jump in again when Anna signaled to me that she could handle it.

“I am a bit chubby, I suppose.”

“How fat are you?” Matthew persisted.

Why didn’t Laurie tell me?

“In England, we call it chubby, so I guess you would say I’m quite chubby!”

“So you’re big and fat.” Matthew concluded calmly.

My husband appeared, and introductions were made.

“I’m going to give Anna a little tour. Will you watch the boys?” Wide-eyed like the boys, Peter took Andy and John into the other room. As he walked away, Anna and I could hear Matthew say, “She must eat a lot of food.”

It was difficult to convey to Matthew that it is not kind to comment on peoples’ appearance. On trips to the grocery store, he spoke loudly and bluntly about shoppers around him.

“He shouldn’t buy all those donuts” or “How black are those people?”

****

“I am so sorry.” I told Anna, wondering if I should call the whole thing off. The weekend getaway of my dreams would have to wait. “Don’t worry. The little ones always comment on my size, but once they get over it, we have a jolly old time.”

But I knew Matthew wouldn’t get over it, and that it was going to be a long day for poor Anna.

I had a hard time relaxing and getting in the spirit of the party, and finally shared our story with a few of the guests, who laughed uproariously. It was 1996, and autism was still considered a rarity-tragic, yet exciting.

“When did you find out he had autism?” one of the guests asked. “I hear they’re brilliant”, said another. “What will he be like when he’s a man?”

We left the party early, and when we arrived home, Anna looked ragged, and relieved to see us.

“How’d it go?” I asked cautiously.

“Anna ate pizza and ice cream”, Matthew reported.

I quickly ushered Anna out to her car and folded a big check into her hand.

“I don’t know how you do it,” she said.

I thanked her, and said I’d hope she would come again. What else was I going to say? He hadn’t meant to, but Matthew had hurt this woman, and I felt terrible. Now I would have to go in the house and have a talk with Matthew, try to explain once again.I could say, “How would you feel if…” or simply say “Anna feels sad because you told her she was fat.” His reply would be, “ but she is fat.”

And as Anna drove away, I thought, tears coming suddenly, how do I do it?

*****

From that day on, I introduced Matthew to new helpers ahead of time.

But how can you find motivated and qualified people who you can trust? After years of trial and error, I figured out some great resources. This is what I recommend:

  1. Call your local college and talk to a psychology or education professor. They can refer you to many students who would love to learn from your child (While making money at it!) I have found many great helpers this way, many of whom are still in touch with Matthew.
  2. Once you find this wonderful people, treat them like family.
  3. Your child’s speech therapist/physical therapist/etc. might like to work with your child, or might have friends in their field that would.
  4. When your child is, as my son Matthew told me at age 14 “too old to have a babysitter” hire mentor/friend types.
  5. Last but not least, Autism Speaks has the best resources pages that I have ever seen. If you can’t find exactly what you are looking for by clicking one of the many links provided, phone your local Autism Speaks chapter and ask for recommendations!

Do have a success story regarding childcare? Share it in the comment section below – we will choose five of you (on Monday, August 2) to receive a copy of Laura’s book.


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