Sarah Barnes has combined her storytelling skills learned as a newspaper reporter for various newspapers, most recently the Austin American-Statesman, with quite a story – about raising a daughter with an atypical brain – to produce a fascinating memoir.
I’m going to steal a quote from the back of the book. Sarah Barnes and her husband, Jim, were having a regular traditional life when something irregular happened: “When the daughter, Meredith, was seven months old, they received a devastating diagnosis about her brain, and happily-ever-after became differently-ever-after from that point on. Although they faced many obstacles, their determined daughter helped them find hope and humor in the face of unthinkable challenge.”
Sarah was a successful reporter at the Statesman but after that diagnosis she left the newspaper. She returned later to write a popular, regular column, “A Different Road.” With the column Sarah has been chronicling her life with Meredith , the challenges and successes and frustrations and everything in between. Her latest column ran just last Saturday. You can read some of the columns, as well as learn more about Meredith and Sarah, at Sarah’s blog here:http://www.sarahbarnes.com.
This memoir is titled Meredith & Me: A mother and daughter on a profoundly different journey.
Barnes’ memoir is engaging, important and excellent. I’m not just throwing out random adjectives instead I am going to explain them.The book is engaging because of Barnes writing style for this book, which is personal narrative with fun stories mixed with stories of frustration mixed in with education. A good memoir picks you up and takes you on a trip while you can easily identify with, or at least understand, the narrator. Sarah does that with ease.
The book is important because it gives a glimpse of what it is like to be the mother of a child who does not become the child you expect. What is it like to get that diagnosis that her brain is atypical, with the official diagnosis agenesis of the corpus callosum (ACC) .
What’s it like when she doesn’t reach milestones when others her age does? How does that affect the family? How about when Meredith gets a younger sister? Barnes answers all of those questions and more.
I think that’s important to know, what it’s like to go through these different experiences. I work in the special needs field, usually with families similar to Sarah’s, where the family is just moving along while adjusting to some hurdles and bumps due to a child or teenager where something is slightly atypical but while there are frustrations and problems there are also pleasant surprises and joyous accomplishments.
While this memoir is about one particular family I can attest that what Sarah describes are common in many of the families I work with, whether the child in question has autism or other types of intellectual disabilities.
While this memoir is about one particular family I can attest that what Sarah describes are common in many of the families I work with, whether the child in question has autism or other types of intellectual disabilities.
That’s another reason why it’s important and excellent, actually: that it’s not all sad, nor all happy, nor pushing to educate. When I met Sarah and Meredith, Sarah told me that was one of her concerns while writing and editing this, not to make it too negative or sad, nor preachy, not educational.
This book is excellent because she manages the perfect mix of all of those things. And meeting Meredith, after finishing the memoir that same day, she was just like I expected which told me that Sarah had done a perfect job describing her.
Reading the book I was at times cheering for Sarah and Meredith and other times tearing up for them and other times getting angry and glad Sarah was going to fight some of the many injustices done against students with special needs in public school systems. The latter are often unintended but that does not erase the pain and indignities.
I am consistently doing interviews with authors I know and love as well as some I’m new to. But not all interviews have the same level of importance or fascination. I jumped at the chance to do this interview with Sarah both because I work in the special needs field and I want people outside that field to learn more about what it’s really like versus all the stereotypes and myths and fictional stories that get some parts right and others completely wrong.
I also wanted to do this interview because I had read some of Sarah’s prior work and knew this memoir would be amazing. And I was right.
I’m honored to help promote the book. I hope it gets much media attention and coverage. Many can learn a lot from this book and Sarah’s story
I invite everyone reading this to come to the book signing, Friday, December 11 at 7PM, to meet Sarah and hear more about the book and Sarah’s experiences. I think you will like what she and her book have to say.
Scott: What do you hope people will take away from reading this book?
Sarah Barnes: This is an eyes-wide-open memoir, it really is. After reading this book, you should come away with a sugar-free account of how a mother deals with the worst news of her life about her baby. The book shows how I tried to be a part of the world of perfect “Gerber” babies, the ones that looked like the illustration on the front of the Gerber food jar. The reality that I was not in that club gave me a palpable sense of anguish and fear, something everyone experiences at some point. I want the reader to see that I may have a little girl who needed a walker and cannot follow a map, but my narrative is universal in its themes of hope, fortitude and coping. I want readers to take away a better understanding of Meredith and other young people like her. She doesn’t walk perfectly and she can’t always use her speech, but she will absolutely make you laugh and if you spend a day with her, you will see the obstacles she faces are not nearly as important as how the people around her treat her. It’s like if people understand her backstory, maybe they will understand what it is like to be different and my metamorphosis from teary-eyed mom to hellbent advocate will not be in vain. But, you know what? If people read this simply for pleasure, then I have accomplished something far more than any lesson I might impart.
S: Your book eloquently and movingly describes your challenges and adventures raising Meredith. What does Meredith think about you writing about her in columns and your blog and now in a book?
SB: Meredith cannot read, so I usually tell her what the content is about and if there is a picture of her, she loves that. She has a healthy ego and she doesn’t seem to mind sharing her achievements with the entire city of Austin. We do get recognized out on errands and though she is shy when a “fan” comes up to her, she understands what is going on. Guess what she wanted to name the book? “Meredith.”
S: I’m curious what it’s been like for her sister, younger in age but more advanced in other ways. It can be hard to be a sibling of someone with special needs. How does she feel about it and deal with it?
SB: I always say that her sister, Caroline, knows more about stereotypes and prejudices than the majority of 14-year-olds out there. And it’s like she brings that into everything she does. I’m seeing a growing maturity in her in terms of issues she is learning about in school, and she always brings a sense of outrage and a push to resolve things she thinks are unfair. I’m enormously proud of her. She does spend a little time with Meredith, but honestly those two sisters are as different as they come. They have disagreements, different taste in music and all the kinds of typical conflicts you find between teenage siblings. I’m a strong believer in letting them find their own way in terms of their friendship; the love is already there.
S: The challenges your family faced are hard enough but you mention at least once that it can be frustrating that what Meredith has, an atypical brain, is not as well known. Do you think your guys journey would have been less hard at times if she had something more well known like autism or Down syndrome?
SB: Well, I used to dream of Meredith having a disability that was easier to pronounce and more well known because I wouldn’t get the blank stare when I said she had “agenesis of the corpus callosum.” Sure, autism or Down syndrome would have had more instant recognition, but after several years I realized that every kid has a different level of disability and before long the label doesn’t even matter anymore.
S: One thing I’ve noticed is true of all folks with special needs, no matter the type or label, is that transitions are hard. Some use visual schedules or reminders. What have you found work best for transitions for Meredith?
SB: Yeah, I do know kids who need charts for their entire day to see what is next. Meredith likes that at school. I guess transitions for Meredith are only hard when they are new ones. Meredith seamlessly goes from the house to the bus to school to a field trip and back home again. But if you throw something new in there like a dentist appointment, then she will have a lot anxiety which means a lot of questions. It doesn’t seem to make a difference if we try to prepare her days before, she still finds it stressful. I guess we’re all like that just a little.
S: The book begins with an author’s note where you state you will refer to friends by their first names but others – administrators and doctors – by their full names. Was that a hard decision, to fully identify folks? How did you reach that decision?
SB: The most surprising thing about this book was how much more difficult it was to write than a newspaper story. Although we have sometimes used first names for someone under 18 in my columns, this was a much bigger story to report. If it was going to be a memoir and not a phone book, it only made sense to refer to most people by a first name. I was not trying to hide their identity, just the chunkiness of using the full name. Sometimes we would get five new people helping Meredith in one year, so lots of names.
Plus, beyond the small professional circuit of teachers, therapists and others, no one needs last names to understand the story. For doctors and other officials, it felt weird to use just first names. So, basically, it became “Sarah’s Naming Rules.”
S: Can you talk about your decision to write about what Meredith was going through in middle school in her Life Skills class. What were your objections? Was it scary writing about that not knowing if it would help or hinder things? What was the result?
SB: Yes, that was stunning, wasn’t it? Her experience in middle school was one of the lowest points in my relationship with a school – ever. I questioned my motives over and over, but if school administration tells you your daughter cannot walk in the front door because her designated waiting area is behind a locked outside door in the back of a building, well, I ultimately decided the pen was coming out. The school administration basically fixed many of the problems before the story was published, but I went ahead with it because their policies were so heinous, that I wanted to make them part of the record so that people could see how Meredith was treated. I felt like pumping my fist in the air the morning the paper came out. I knew Meredith would be fine because too many people were now being scrutinized for their contributions to a bad learning environment.
S: What has been the response from the columns? You talk about positive feedback but i’m curious if you have gotten any negative response and/or insulting questions?
SB: I don’t think I’ve ever really had any negative feedback except a cowardly anonymous letter to the Austin American-Statesman detailing every personal flaw of my daughter as if that justified her for being treated without basic dignity and respect. She was just 12. Also, I wouldn’t consider this negative or insulting, but I have heard from people of many different faiths and although sometimes I do not agree with their assessment of God’s role in my situation, I do find it moving that they share hope.
S: What’s the future look like? Are you going to keep writing columns about Meredith? Do you hope to use the book to educate people?
SB: Yes, I definitely want to use the book to educate people and make it available to people who are looking for either an empathetic read or real experiences they can share with others. I just love the column even though I don’t write it as often. It was the first thing that ever identified me as a mother writing about her child, so it’s very special. Things are changing almost daily in the world of newspapers, so I’m not sure I will be able to continue in that format forever. Plus, Meredith is getting weary of her mother following her around and asking for quotes.
S: And what’s the future look like for Meredith after she graduates this year from high school?
SB: Thankfully, she can stay in the district until she’s 22. So this is Meredith’s last academic year, but we hope she will be accepted into program in the school district where she can get job training and even try out some different jobs. We won’t discuss a new living situation for her yet, but things are going to get more complicated very soon.
S: Did you have any interesting surprises when you went back and read your notes and columns for this book?
SB: Yes. The worst place to be in August is the attic. And I am horribly unorganized. I literally had bits of paper falling out of drawers and computer files with names that would not suggest you will need this for you book. My best discovery was learning how much patience my family and friends had in waiting for me to get the book done, especially Jim Hemphill, my husband.
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