Book: “My Heart Can’t Even Believe It”

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Local journalist Amy Silverman tells the story of her daughter Sophie, who has Down syndrome, in her new book, “My Heart Can’t Even Believe It.” Silverman will talk about her new book, which is part memoir, part investigative reporting and part parenting manual.

Ted Simons: Amy Silverman is a long time journalist who happens to be Sophie's mom. Sophie is Silverman's charismatic daughter, an active, curious kid with down syndrome. Her book, my heart can't even believe it, which describes raising a down syndrome child. Good to see you.

Amy Silverman: good to see you too.

Ted Simons: This is a wonderful read. The kid is captivating, your story is captivating. Who is Sophie?

Amy Silverman: she just turned 13 on Saturday. She's officially a teenager. She is on the fourth day of summer vacation and really feeling it. Very happy to be out of the dress code and all that entails.

Ted Simons: who are you before Sophie and who are you once you had Sophie?

Amy Silverman: I can't use expletives, right?

Ted Simons: no, you can't.

Amy Silverman: I was a lot of things but mostly a journalist at new times. An alternative Newsweekly, where I guess the polite way would be to say we take no prisoners. For a long time I did political reporting. I had a button on my bulletin board at work that said if at first you don't succeed you'll be a loser and a burden on for the rest of your life.

Ted Simons: And with Sophie?

Amy Silverman: I keep it there to remind myself to not be such a jerk. Not overnight but she did change.

Ted Simons: from the book it sounds like she changed you quite a bit.

Amy Silverman: I think so. Yeah. She really helped me see life in the world a little differently.

Ted Simons: we have a shot of Sophie with her sister when she was still having young. You have an older sister to Sophie. There they are. And Annabelle. Does Sophie even -- obviously she had no idea of her impact on you. Do you think she knows how she has impacted you?

Amy Silverman: I think think she has an idea. One thing I talked about in the book was coming to terms with a having a child with down syndrome. There are things she will never be able to do. Around the time I came to grips with it she started saying she didn't want to have down syndrome. On some cosmic level she relates.

Ted Simons: This is a gorgeous shot. This is, was, will probably always be a happy person.

Amy Silverman: not always. Not always. No.

Ted Simons: for the most part.

Amy Silverman: She has a pureness of joy and heart that you don't see in a lot of people.

Ted Simons: yeah.

Amy Silverman: it's weird because it's probably chromosomally related.

Ted Simons: in the book you write when you first had Sophie it was difficult. You didn't feel like she was yours -- I think you used the phrase foreign creature. This was a difficult adjust for you.

Amy Silverman: it was a difficult adjustment and a lot of people don't talk about it or will say the first day, the day my child was born and had a birth defect or some issue was a horrible day. The next day I woke up and I was just so happy and we all lived happily ever after. I don't think that's true for a lot of people and I wanted people to realize that that's okay. You have to be able to work through it. Yeah, it was a difficult adjustment for me to really get to know Sophie as a person. I'm not a baby person anyhow. So until we can have like a real comfortable I'm uncomfortable. Also keeping babies alive stressed me out. She had heart surgery early on. Not to make light of it, but it took longer for Sophie and me to bond in that way.

Ted Simons: took quite a while for you to research down syndrome, to know about -- just the fact that they just love to hug, they hug everything and everyone. Stuff like that you had to learn.

Amy Silverman: I did not know that people with down syndrome have a tendency to be loving and to hug. I did not know that. That's not everyone with down syndrome or all the time.

Ted Simons: this kid is happy. That's your kid. It's not the tall one, it's the short one.

Amy Silverman: she was mad that piglet wasn't at Disneyland.

Ted Simons: you mention medical -- I think one of your quotes was a heart defect is a medical crisis but down syndrome is existential. Explain that, please.

Amy Silverman: when Sophie was born I really had trouble explaining to friends and family my child has down syndrome. What do you say? I call you, say, hey, we have news, Sophie was born, she has down syndrome. Do you say I'm sorry, oh, that's awesome. Most people would say I'm sorry, we would cry and I realized that wasn't appropriate. I would say Sophie has down syndrome and she needs heart surgery then we could cry together. It's not a death sentence, down syndrome isn't. I didn't know much about it. It's easier to hold on to a physical medical crisis I think for a lot of us. To know how to respond as a friend or family member.

Ted Simons: and it was a difficult path for you to know how to raise this child, what her limits might be, what she might enjoy doing. Sounds like she's a bit of a performer. She likes singing.

Amy Silverman: the stage beckons.

Ted Simons: you're a stage mom whether you knew it or not. Where did you find out about down syndrome? Who did you turn to?

Amy Silverman: Sophie mostly. My husband ray is a journalist. He did a lot of homework even before I could leave the hospital bed hoe was in the library doing research. Then he would come back and look at me and I could tell he was thinking you can't handle this. It was years before I started reading about it. I really learned about it from her and the different journeys she went through medically, through therapy, education, mainstreaming her in school was a real lesson but it was all kind of on the job training.

Ted Simons: I think we have a shot of her as one of the actresses on glee. Talk about this particular photograph. This was when she -- you and she, everyone was getting used to Sophie and where she fit in school, in society. Where she fit.

Amy Silverman: a lot of times she's mainstreamed in school, she doesn't want to talk about down syndrome much. That's been an issue with the book that she really relates to a character on the show glee played by the actress Lauren Potter, who happens to have down syndrome and as Sophie would tell you very, very Sassy. For her wax museum at school she wanted to dress up like Lauren Potter. We actually found a connection, the Lauren Potter center. Signed autograph, which is probably all she really wanted.

Ted Simons: as far as she ages. In the book you take us from being born flew the education process. Finding a spot for her sounded like it was just an ab suit ordeal.

Amy Silverman: it was hard. Finding her an elementary school wasn't easy. When it came time to find a Junior high, that was hard. Her sister already attended an arts charter school. Sophie loves the arts so I thought that might be an option. That was not an option. Without a big battle. I quickly realized that just because you can get your kid into a situation doesn't mean you want to because when you put them in a school and walk away for the day, it just wasn't right. I learned a lot about the charter school system.

Ted Simons: And what did you learn?

Amy Silverman: I learned that it is not all things for all kids. That in Arizona, in particular, it pushes out kids with special needs. You as a charter school operator can't say, I'm sorry but your daughter cannot attend your school. What you can do is a lot of, oh, well, I don't know, it might be okay but she might be better off somewhere else.

Ted Simons: heard that a lot?

Amy Silverman: I did from some interesting people.

Ted Simons: I know there are some interesting people named in the book. As she ages, we have shots of her with a book, playing Cards, Sophie is gone from a child to a little girl to a tweener and all these things. I notice in the book you really start to worry about her as an adult. Down syndrome, little kids are cute as a button but teenagers and adults not so much.

Amy Silverman: not always. Not always so easy to accept into society. Because for all the bad things we can say about the school system for Sophie what the experience we have had when we have gotten her into schools has been phenomenal. Until you're 22 you have a full life. Then what? Bottom falls out. So I do worry about that.

Ted Simons: How is she doing?

Amy Silverman: she's awesome. She's doing really well. She has texted me about ten times in the last five minutes wanting to know about a sleepover with a friend tonight. She's practicing how to walk in her new wedges.

Ted Simons: Good for her. A sleepover with a friends. In the book you worry about her being lonely as she ages. There are fewer friends. When you're a kid you're a kid. When you're an adult there are fewer friends.

Amy Silverman: the impact is pretty clear already. She doesn't always want to hang out with people with down syndrome. Sometimes there are issues of hanging out with typical people. She's caught in the middle but I think a lot of us are in a way.

Ted Simons: yeah. In the book, it's so all encompassing. Your life must have just been absolutely surrounded by this child and dealing with this. Did you ever worry about losing yourself in Sophie?

Amy Silverman: wow, that's a really good question. No one has asked me that. I think she and I both have strong enough personalities there wasn't a chance.

Ted Simons: probably right now it's hard to imagine life without Sophie.

Amy Silverman: it's impossible to imagine life without Sophie or Annabelle or my husband in particular Sophie.

Ted Simons: you bring up Annabelle and your husband. They are very peripheral.

Amy Silverman: Very peripheral.

Ted Simons: peripheral players in here. Talk to us about that decision. Basically it's you and Sophie in this book.

Amy Silverman: yeah. Ray and Annabelle make a lot of cameos but I feel they have their own stories to tell. Ray is a journalist in town. That's really for him to tell his side and his view of it. Annabelle is almost 15, and she's been saying for a while she doesn't really want to be written about. She has so the drawings in the book. She did the song that goes with the book trailer. Now when you write a book you need a book trailer. She's present in a lot of ways.

Ted Simons: last question. In the book you write one of the reasons you wrote this was we could all meet someone like Sophie because you really hadn't met someone like Sophie. We all can through the book.

Amy Silverman: That's my hope. That's my hope. Yeah.

Ted Simons: do you think you succeed?

Amy Silverman: Oh, my gosh, I'm way too close to it to know. I have gotten amazing response. They say it takes a village to raise a child, I think it takes a village to raise a mom and to raise a book and I have been incredibly lucky.

Ted Simons: congratulations on the book. Good luck to you and Sophie and the rest of your family. Thanks for joining us.

Amy Silverman: thank you.

Ted Simons: Thursday on "Arizona Horizon," hear about a campaign to renovate the historic Grand Canyon watch tower and we'll learn about efforts to help American Indian students graduate from college. That's on the next "Arizona Horizon." That's it for now. I'm Ted Simons. Thanks for joining us. You have a great evening.

Video: "Arizona Horizon" is made possible by contributions from the friends of Arizona PBS, members of your PBS station. Thank you.

Amy Silverman: Local Journalist

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