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6527212 April 13, 2009

Lessons in Relativity from the State of Autism: An Aberration Story

It's not a perfect world, but we are luckier than most.

I assume we'd all like to be happy 100% of the time. When I was younger, I was unhappy most of the time. I finally decided that a string of pain would always run through me--it was simply my nature to be a bit dissatisfied. Ironically, this realization boosted my happiness level. I began to take more pleasure in the positives in the mix rather than maintaining an intense focus on that never ending, unshakable sadness. I learned that happiness is relative.

If you've been reading my blog for awhile, you know that my dissatisfaction lingers. I try to keep it in check but at times it peaks out overtaking me, my accomplishments, my marriage, etc. creating complex knots that I work to untie and reorganize like colorful ribbons into nice, neat bows. It's not always easy. Somehow I've managed to use those dark moments to better illuminate the brighter ones, like stepping out of a cave into a startlingly beautiful sunny day.

Thinking about all this reminds me of the movie Flowers for Algernon starring Matthew Modine. In a nutshell, it's about a happy, mentally challenged man whose intelligence begins to sharpen by way of a scientific experiment. As his mind sharpens, he experiences the deeper beauty of life he couldn't fathom in his previous state. Oh how wonderful! But as he continues to grow smarter and smarter, he becomes disturbed, dissatisfied, bitter, and fearful. All because he begins to understand how life can suck, and that the world isn't always fair and just and right. Eventually, he begins to regress, and becomes desperate to undo what is happening to him but fails. He once again becomes that simple, happy guy, and we are left to ponder which is a better state.

Flowers for Algernon fills the viewer with numerous questions related to happiness, satisfaction, and awareness. Knowing all that we know and having all that we have, how can we possibly be happy? Well, we can take a lesson from another Matthew, a guy who faces social and neurological challenges everyday. Matthew Shumaker is the focus of his mother's book, A Regular Guy: Growing up with Autism.

Laura Shumaker is a great mom! She has raised a son, who by the standards of all the neurotypical folks out there, ought to be hanging his head in sadness lamenting all the ills that life has dumped in his path. Yet he moves toward happiness, rather than away from it, in his own profound way. Although he longs to be a regular guy, he doesn't view his life as a constant struggle. He's proud of what he does and what he knows. He and his mother are an inspiration and a gift to those of us tempted to sit around focusing on what we don't have and what we can't do.

Your book, A Regular Guy: Growing Up with Autism, covers many years. Can you begin by telling us how you first became aware that Matthew was autistic?

We began to suspect something was up with Matthew when he was about two years old. His language development slowed and he became echolalic, meaning he would repeat words we said to him rather than being conversational. At the same time, he developed some odd behaviors. He lined up his toys, and was fascinated with water going down drains and with wheels. When he was three, Santa asked him what he wanted for Christmas and he said, "A drain." Santa said, "A Train? I might be able to get you a train!"

About the same time we noticed his strange language and behaviors, Matthew's neurotypical brother Andy was born. As we watched Andy develop, Matthew's delayed development became glaring.

What was your first reaction to finding out about Matthew's autism, and how did you cope?

I was determined to fix him! So many doctors and psychologists used the term delay so I thought, Well, I'll just help him catch up. Acceptance was a long way away. When Matthew was about ten, I really hit the wall and found a great therapist who helped me get the help I needed such as respite care and mentors for Matthew so that I could enjoy my other two sons and get a rest. My parents and other family members were incredibly supportive and helped me keep my sense of humor.

As Matthew was growing up, what were the toughest hurdles for him? How were you able to help him through these?

As quirky and socially awkward as Matthew was growing up, he CRAVED friendship and it was nearly impossible to help him learn how to find and keep friends. That's when I started hiring friends--helpers and mentors (usually college guys) who could hang out with him and do guy things. Matthew learned a lot from these terrific helpers. But he still needs a lot of social skills training! One of our biggest problems has always been explosive public meltdowns, which picked up steam as Matthew entered adolescence. He's been taking medication that helps him manage his frustration and outbursts--a God send. These days, there are medications that help the lives of autistic individuals with pretty favorable side effect profiles.

Your book shares some of the painful circumstances that Matthew found himself in. It's tough for any parent to watch their child suffer, whether it's emotional or physical. How did you get through these situations, and what did you learn? What did Matthew learn?

I learned patience! And I learned that when I was struggling and feeling embarrassed and humiliated by Matthew's behavior, people were willing to help if they understood what I was dealing with. For example, one time Matthew saw an elderly woman fall down and he ran to her side and started to laugh. Onlookers looked at me like I was a horrible mother until they saw how mortified I was. "I am so sorry," I said, "My son is autistic." I ended up getting more sympathy than the poor woman who took a tumble!

I also learned that those who weren't so nice had their own reasons. Everyone has a story. As my father used to tell me, "Maybe his wife left him today," or "Maybe her dog bit her today." Matthew continues to learn that there are consequences for his behavior. One of his problems is that he (still) thinks he can bother or tease (or even hit) people, and that when they get angry he can just say he's sorry and everything will be forgotten. Unfortunately, that's not how the world works.

Every child is unique and lovable. What are some of the unique things about Matthew that you love?

Matthew has a great sense of humor and the most wonderful, gurgle-filled laugh. He is a tireless worker and will work in the garden from dawn to dusk without complaint. He enjoys helping his friends who are more disabled than him. He loves his family. The thing I love most about Matthew is his face breaking smile when someone is kind to him.

As he was growing up, what were some of the things you did to help Matthew learn, grow, and become the young man he is today?

When I found something that Matthew enjoyed doing (painting, yard work, cooking), I used those activities as rewards and made the most of them for teaching moments. I made sure everyone who cared for him at school and at home did the same. Matthew loved the consistency and learned that he was valued for his talents and abilities. Now he considers himself a landscaping specialist and is very proud of that. I'm sure that will be his livelihood.

Every parent wants their children to be happy and healthy. When faced with a diagnosis such as autism, can parents believe that their child can still live a happy and healthy life?

I'll never forget the day Matthew was interviewed by a social worker. She needed proof that he was disabled enough to receive social security benefits. She said, "I have a cousin who struggles the way you do." Matthew looked shocked. "How do I struggle?" he asked.

Happiness is relative, and it's a challenge to help a person with a communication disorder find it, but it is possible!

I'm guessing that as a child and young adult, you never imagined you would have someone like Matthew in your life. Now that you have raised him, would you trade the experience for something the world deems as 'better?" What has parenting Matthew brought to your personal life? What does it continue to bring?

Having a son like Matthew is a gift, not just for me, but for our whole family. We are so much more tolerant of others--whether they are disabled or not! We appreciate our own good health, and have all developed patience and humor in all areas of life.

At the same time, having a child with autism is a strain. My husband and I are still together (so many couples break under the weight of the years of stress), and joke that we'd have a hard time explaining Matthew on Match.com. It has been stressful for my sons, Andy and John, and while we have planned for the future, I'm sure they worry. It's not a perfect world, but we are luckier than most. We have a great circle of family, friends and helpers who support us.

In your opinion, what is the number one misconception about autism?

The NUMBER ONE misconception is that people with autism are ALL in their own world--that they are all the same. NOT true. Many crave relationships/friendships and just have a very difficult time forming them. Matthew has been telling me lately that he wants to live with a woman and get married (in that order!)

What are the top three things you would like to say to parents who are just discovering that they have an autistic child?

The top three things:

1) EARLY INTERVENTION! Outcomes can be so much better if parents get an early diagnosis and start treatment

2) Don't forget the siblings. Make sure you give them the attention--one on one--that they deserve. I used to leave Matthew with a helper or with my husband and take my sons John and Andy for fun outings--sometimes together, sometimes just one on one. It was wonderful.

3) If you are feeling depressed or are simply getting sick a lot from the stress--get help. See your doctor and get the name of a good psychotherapist. Some people like group therapy. I found one on one psychotherapy more helpful.

AND MOST OF ALL-keep your sense of humor.

Watch the book trailer for A Regular Guy: Growing Up with Autism:

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