Guest Blogger: About Avi

Picture books may have relatively few words but they can convey big ideas. A manuscript goes through many rounds of revision and editing, and many people can be part of that process. In preparing Nathan Blows Out the Hanukkah Candles for publication, we showed the manuscript to a wide variety of readers, from preschool teachers to families with special needs children. We were especially interested in feedback from siblings of special needs kids, who we thought would have a very important point of view for us to consider. Rebecca Goldsteen, now a high school senior, is one of the siblings we approached during the editing process. She shared an important perspective on what it is like to have an older brother with autism. Rebecca provided us with important notes on the realism at the heart of the story—what a relationship is like between siblings, or with a friend who does not understand autism. We thank Rebecca for allowing us to share the following piece of her writing about her brother, which she developed as her college essay:

Being human means being imperfect. Being human means having flaws. Being human means being independent and original. But most of all, being human means interacting with the world around us, including the way we treat others.

When people realize my brother is autistic, whether or not they are aware if it, they immediately treat him and speak to him differently. This has made me very aware of the way I treat others, based on what I think I know about them.  Many people with autism are very skilled in something, whether it is related to school, sports, or hobbies. My brother, Avi, has the most impressive memory of anyone that I have ever encountered. Those who know this about him tend to associate it with his autism and categorize it as “the thing he’s good at." To those who know him well, however, it is easy to see that this aspect of him comes nowhere close to defining him as a person.

If anyone who knows him well were to be asked to describe him, some adjectives they might use include caring, sweet, funny, loving, smart, confident and creative. It is understandable that these words have been used an infinite number of times to describe countless individuals but they truly shine through Avi’s personality, specifically, through the way in which he treats his peers. Avi has taught me to treat everyone fairly, no matter what. Even if he doesn’t know someone, or has heard bad things about him or her, he talks to them respectfully, as if he or she is a close friend of his.

Most people don't really think about the importance of family until they are grown up. Avi never forgets to tell our immediate family, as well as our entire extended family, how much he loves and appreciates all of us. If not for him, I doubt I would think about how happy I am to have the family that I have, even though we have many flaws.

One day when my brothers and I were home, I was frustrated about something too small for me to be able to recall. Avi noticed my frustration and asked what was wrong. I explained to him why I was aggravated and he responded by asking, “Why?” This puzzled me. I tried once more to explain the reason and how there was nothing I could do about it. He shrugged, put one hand on his hip and scratched his head with the other, smiled, and asked if I wanted something to eat. I was amazed at how, although he understood my frustration; he couldn’t understand why I was focused on something so small and unimportant when I could be enjoying myself.

My friends have always been impressed with how difficult it is for me to become angry. I can’t say that it is because I have a high tolerance, because that is untrue. The reason I can easily disregard things that irritate most people is because I have learned to put myself in Avi’s shoes and see the way that he would perceive the situation and think; “Is this really worth getting mad about?” If the answer to this question is no, which it usually is, I simply forget my aggravation and move on.

Avi does not hold grudges. He truly understands the meaning of second chances. He wakes up every morning with the attitude that yesterday is history and that the present is full of possibilities. I have seen the way people treat other people, and I have seen the way that Avi treats other people. I strive to be like my big brother: to judge as little as possible, to ignore the little things that frustrate me, to make every experience as enjoyable as possible, to treat others the way that I want to be treated, to do things not because I am supposed to but because I want to, to make every day better than the day before, to love with all my heart and most importantly, to be happy.

--Rebecca Goldsteen

Hanukkah Story Promotes Autism Awareness

Stories can be powerful, accessible ways for children to understand people different than themselves. Stories can also show that people share universal traits in common, like the desire to be happy, healthy and part of a family. Nathan Blows Out the Hanukkah Candles is a book that will connect readers with a young autistic character.
Kar-Ben author Tami Lehman-Wilzig lived for a year in Providence, where she met local PJ Library director, Nicole Katzman. Tami introduced Nicole to her books and Nicole, the mother of four young children (one of whom is autistic) and a fierce campaigner for autistic children's rights, told Tami about her determination to have a book on an autistic child written for the American Jewish community. It didn't take long for the two to pair up and develop Kar-Ben's new book Nathan Blows Out the Hanukkah Candles. Read the authors’ exchange about their story:

Nicole: Accepting the other in our midst is an important Jewish value. As a mother of an autistic child I didn't feel that acceptance. All too often I found the situation to be reverse and at times painful. I knew that in order to help children understand how to accept the other they needed a story to which they could relate.

Tami: I understood Nicole's feeling of urgency. One of my sons has special needs and I remembered how difficult it was for him as a child. In addition, there were autistic twins in our neighborhood while our sons were growing up, so I was already familiar with autistic behavior. For example, they would continually repeat the same question or statement, but we needed more than behavioral differences. We needed a peg around which we could develop a compelling story.

Nicole: At first I tried writing a story, but it didn't work. After reading it, Tami decided that she had to “interview” me. So I told her all about our son Nathan. She kept prodding me with questions. Finally, she said 'give me an example of something Nathan did that got you really upset.'

Tami: The minute Nicole related the incident of Nathan blowing out the Hanukkah candles the previous year, I knew we had the peg. It was perfect. Nathan's action was off the chart and Hanukkah was a wonderful setting. Creating a story around it with the right feel was the challenge. I wanted the story to be true – not too sugary, but not too tough. Finding the right balance was a challenge and it took several drafts, plus the help of “book doctor” Deborah Brodie to put me on the right track. It was Deborah who suggested that I tell the story from a sibling's vantage point.  The minute I did that, everything fell into place. Since I was already familiar with the repetitive nature of autistic children's conversations, I used that particular quirk to jump start the story. I consulted with Nicole throughout the entire writing process to make sure that Nathan's behavior was on track, as well as the reactions of siblings and kids.  

Nicole: It's exciting for me to have a book on an autistic child that is specifically my son. It's more than a dream come true. It's an opportunity to open people's eyes and minds. Too often they are misinformed about autism, insensitive in their comments and judgmental of both the child and his/her caregivers.

Tami: I am so pleased that Nicole inspired me to write this book. Both of us feel that Nathan Blows Out the Hanukkah Candles will make an important contribution to the Jewish community by being read aloud in the classroom or at home, and then used to open a conversation on how to love, respect and understand children who are different.

Nicole: Do you have a child with autism, or a friend or relative? If you have a story of your own please share it with us. Help us break down the barriers.

Please add your voice to Tami and Nicole’s initiative to create more understanding about autism.  Please post your own comments, story or insights about autism below.