Monday, September 25, 2006

Meet My Brother: A Sister's Story of Love and Autism

There is a long history behind this book and why it is so important to me. I'll try to make it brief. My husband and I are planners---well, I am at least and he's happy to have someone planning. Our life plan for children was: get married, wait five years, then have a boy and then a girl. Just like that. HA! Said God. HA! HA! HA! Said God. We spent many harrowing years with our main identity as Infertile. During this journey, I was incredibly fortunate to meet some absolutely amazing people who remain good friends to this day.

One friend in particular had a journey longer than mine, that required many more passports. She was blessed with two precious children---a boy, then a girl. Her beautiful boy stuck out to her as unique in some way. In his way, he kept trying to tell her something about himself, and lucky for him, she was listening. He was eventually diagnosed with Pervasive Developmental Disorder---Not Otherwise Specified. From the beginning, she wrote me detailed emails about her son, and their new journey along the autism spectrum.

From the side, through her words, I experienced worrying that something might be wrong with a precious child, and then wondering what is wrong: tests, more tests, close-minded doctors, close-minded or misguided although well-meaning family and friends, more tests, wrong diagnoses, wrong treatments and medications, tentative diagnoses, more tests, more specialists, and more treatment. Through her words, I experienced how it feels to juggle life, and two children, one of whom is special needs. Through her words, I learned how it felt to have nasty and judgmental comments hurled at you and your child, who bears an albatross no stranger can know, because it isn’t stamped on his beautiful features in any way. He carries his challenge inside. Through her words, I learned much about the autism spectrum, and what it is like---and what it isn't like---to live with a child who is challenged by it. Simply through her words.

Words are powerful: they educate, and challenge readers to empathize. That’s why her words, and her book, are so important to me. It added experience and through that, understanding, and the potential for kindness and outreach to children and people I might not have known how to interact with before.

And answer to a Call to Action about issues and topics in our world, I bring you my friend Gina Pintar’s words about parenting a child with pervasive developmental disorder.

The following is the introduction she wrote to her fantastic book---which I am publishing soon---written from the point of view of her daughter, who shares what autism can be, and what it can mean to a sibling.

After her words, if you stick around, I’ll share some facts.

A note from the Author

Why I Wrote This Story

“My dear seems like yesterday that you came into my life. You have made every day a great day ever since. Your smile wakes me up in the morning.”

While my heart feels this way about my son, some days, my feet drag with the fatigue that comes with handling a special needs child. In addition to all of the usual craziness a parent faces, I take my son for different treatments with different specialists practically every day. He bears his chelation, physical, occupational, speech and other therapies, as well as his ongoing tests and doctor visits, with strength, and they are worth it to us both because of the positive effect it all has on his symptoms and behavior.

My son plays soccer (which I coach!), enjoys swimming and playgrounds, loves his favorite TV shows, giggles with and torments his little sister...all the things your children do.

But, he’s also different. The “extras” and the “differences” can be challenging. Even more challenging are the incorrect assumptions, myths, and fear my son and I face with people out in the world.

I wrote this book because I want to educate parents and children about what they are really seeing when they see my son, and to reassure them that he is, at heart, just a kid too.

Not all children who have meltdowns in public are spoiled and undisciplined. Some have a Pervasive Developmental Disorder (PDD), which is the umbrella that covers the spectrum of autistic disorders.

These can cause children to be over or under sensitive to things in the world we might not even notice. As in the book, sometimes this causes a PDD child to act out in response to the situation and stimuli. Like any parent, I try to anticipate a meltdown and I try and do all I can to stop it or limit it but it is not always possible. It is also many times not possible for the child to just stop.

We don’t know what causes PDD. Kids might be born with it, or born with the potential to get it. But we do know it’s not a mental illness. And let me promise you that I haven’t caused it through bad or indulgent parenting. My son’s symptomatic behavior isn’t misbehavior or rebellion, and his tantrums aren’t a sign he is spoiled. He isn’t unruly or dangerous; he’s got PDD.

I also want to help children better understand a child with a PDD. I want other kids to play with my son and not be afraid of him. He can be and wants to be your friend.

I wrote the book from the sister’s point of view to best explain what other children see when they see a child with a PDD, and also because my son’s condition affects his sister.

I hope this book gives an insight into our world, especially into my son. I hope it provides reassurance that children with one of the PDDs are just kids, too. I hope it reassures you if you had any questions or concerns about a child with this who you know, or who might be in your child’s class or on your local playground. I hope you feel like it is okay to get to know the child, and his parents.

Thank you!

Quick Facts about Autism Spectrum Disorder:

• About 1 in 166 people are born with autism (Centers for Disease Control Prevention, 2004)
• About 1.5 million Americans today are believed to have some form of autism
• U.S. Department of Education and other governmental agencies believe that autism is growing 10-17% per year
• Nobody knows why, for sure, that it is increasing
• Boys are four times more likes than girls to have autism
• Otherwise, it has no bias. It might affect any family in the world, regardless of race, ethnicity, social boundaries, family income, lifestyle, or educational levels
• Autistic children can improve with treatment, but there is no cure. It’s a disorder, not a disease.

True or not true?

People with autism can’t hug or show love. Not true. It might not be like a person without autism, and might take more time. But people with autism can give and receive love and affection.

People with autism never look anyone in the eye. Not true. Sometimes they might not, and it might be less than typical, but people with autism can look other people in the eye.

People with autism are mentally challenged. Not true. It’s true that autism presents a challenge, but it is an information processing and sensory integration challenge. People with autism can be very smart and do well in school and life, just like you. In fact, most high-functioning autistics test as average or above average. Some do test below, but as with all people, it’s a spectrum.

Different diets, growing up, and medication can cure autism. Not true. Autism is a disorder, and so it has no cure. However, with proper diet and treatment, the person might show less autistic symptoms.

Some autistic people use sign language. True. Many people with autism develop language skills (talk) but some use sign language or picture cards, or some alternative method of communicating.

Sometimes smells, sounds and touch really hurt a person with autism. True. The Autism Society of America explains it like this:
For most of us, the integration of our senses helps us to understand what we are experiencing. For example, our sense of touch, smell and taste work together in the experience of eating a ripe peach: the feel of the peach’s skin, its sweet smell, and the juices running down your face. For children with autism, sensory integration problems are common, which may throw their senses off they may be over or under active. The fuzz on the peach may actually be experienced as painful and the smell may make the child gag. Some children with autism are particularly sensitive to sound, finding even the most ordinary daily noises painful. Many professionals feel that some of the typical autism behaviors, like the ones listed above, are actually a result of sensory integration difficulties.

Many thanks to the Autism Society of America for the information on their web site, which helped us with our information.

By Julie Pippert
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© 2006. All images and text exclusive property of Julie Pippert. Not to be used or reproduced.

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Her Bad Mother said...

Thanks so much for sharing this, Julie - and thanks to Gina, too, and her children.

Sudiegirl said...

This was a great post. My best friend from high school has three children...the oldest has PPD, her middle child has Aspergers, and her youngest has ADD. I remember how hard it was for her as they were growing up...fighting with teachers, having to explain things all the time...

I'm going to recommend this book to her.

Poppy Buxom said...

Thanks for posting this.

Is this book out? I have two kids who are both on the spectrum, and I've love to read it.

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