"The sun will shine again" was a quote that author Gillian Marchenko cut out and taped up in her home. It came from an email a friend sent to her shortly after the birth of her third child, Polina (Polly for short), who was diagnosed with Down syndrome.
Gillian's memoir chronicles her journey to acceptance of her new role in the world of special needs, Down syndrome, Early Intervention, and therapy appointments. She also realizes along the way that her daughter is at first a baby, not a diagnosis.
What I found most interesting about Gillian's memoir is that she had the added perspective of giving birth to her daughter in the Ukraine where people with disabilities essentially do not exist. The beginning of the book tells of a cold pediatrician that basically tells Gillian and her husband that she will understand if they want to leave the hospital without their child and sign their rights away. This was in 2006 and that scared me: the mind set in many Eastern European countries is still this way.
Gillian also bares her soul by the telling readers how she coped with her new daughter's existence and while it wasn't the way I personally coped, I know many moms have coped in the same way in order to shut off their feelings and the depression that can often follow an at birth diagnosis that no one was expecting. What I liked most about this memoir is that she was so honest and upfront about her feelings; there was no hiding behind the words. It is a very raw and emotional memoir and it is very real.
Eventually the sun would shine down again and the realization that Polly is just like her other daughters (and, as her husband Sergei says, "looks just like a Marchenko") would sink in for Gillian, which happens for most other parents who have a child with Down syndrome.
This is definitely worth a read by all parents, not just those who have a child/children with Down syndrome. I think Gillian's thoughts about trying to deal with a situation she didn't ask for and trying to maintain an outward happy persona are things that many people can relate to. Two thumbs up!
Showing posts with label Stephanie Sumulong. Show all posts
Showing posts with label Stephanie Sumulong. Show all posts
Wednesday, October 9, 2013
Friday, July 19, 2013
"Up Syndrome" by Megan Abner. Reviewed by Stephanie Sumulong
Recently I received a copy of a new book called "Up Syndrome: It's all about the attitude" by Megan Abner. I was excited to get my hands on this book for one main reason--an adult with Down syndrome wrote it! Yes, you read that correctly: a 30 year old woman named Megan who has Down syndrome wrote this book. These are her words, thoughts, and feelings about what it means to have Down syndrome.
First it should be stated that the book is unedited--a friend of hers took her journals and typed everything out the way she wrote it. Therefore punctuation, word usage, and grammar are not changed or fixed in any way. That didn't bother me; in fact I preferred it that way because it really made me think about Megan and how she sees life.
Secondly it must be noted that Megan doesn't use the words Down syndrome; she believes that "down" makes it sound extremely negative and so instead she uses Up syndrome and she encourages others, especially her family, to do so too.
Thirdly, while this book is written by a person with Down syndrome and she does tackle some subjects related to Ds, the message from this book applies to anyone. Life is all about your attitude and how you want to live it. It's clear that her attitude about enjoying life and its challenges has made her the person she is today. She says as much on pg. 4: "It's all about what you think of yourself, there's nothing else, just put yourself into it. Don't let anybody make you feel inferior". I think that's a message that anyone can relate to, regardless of their connection to Down syndrome.
If I could sum up this book in one word, it would be pride. Megan has a lot of pride about who she is and what she does. She says simply how smart she is, how much she enjoys driving, how she loves putting words onto paper, how fantastic she feels about writing a book, how much she loves her jobs. I don't think I've personally ever felt that way about myself and even if I did, I never said it aloud. She not only says it, but she means every word of it and wrote every word of it down. Her family seems to take a lot of pride in Megan too, based on the real relationships she has with her extended family--serving as maid of honor for her cousin's wedding--and how they treat her--she goes on adult vacations with her family, drinks beer and wine, and discusses hard topics like her grandfather being ill and wishing to see her before he dies.
When Megan discussed going to school, I was worried about her experience. I realize that Megan is more my contemporary than my child's; she is nearly 30 years old and I'm 35--when she was in middle school, I was attending high school. But I'm also a realist and I know that public schools and special education programs still have many miles to go before they truly educate everyone and educate them well. It definitely saddened me when she talked about not having any friends and no one wanting to sit with her at lunch. I am terrified of sending Owen to elementary school. I am so worried that with his lack of talking and communication he will be limited in who will play with him or want to be his friend. When someone like Megan, who writes and communicates well, has problems making friends, I have to wonder what will become of my boy. And worse, will he ever be able to tell me if someone made fun of him or excluded him?
One of my favorite parts of her book is what she wants to tell every pregnant woman about having a child (any child, not just those with Up syndrome, as she says): she wants them to know what her mother did for her (like homeschooling her in middle and high school when it became clear that the district wasn't doing its job), talk to these women about her thought process and how smart she is, and give kids an education. She hopes that parents will teach their children to have open minds which would make people look at Up syndrome most positively. An open mind about people who are different than you..........what a wonderful concept!
This book for me held a promise that even if someone has a disability s/he can still do great things. Owen will soon be 4--too soon to tell what his future will be. But I think the best thing to know as his parent is that he DOES have a future--it may not be the one that I dreamed about before he was born, but it will be HIS, whatever he decides to do or to be. Megan states that "people with different abilities can make the world fabulous"; she's doing it her way and I know Owen will do it too.
Reviewed by: Stephanie Sumulong
Blog: The Sumulong 3
Page: Facebook: The Sumulong 3
First it should be stated that the book is unedited--a friend of hers took her journals and typed everything out the way she wrote it. Therefore punctuation, word usage, and grammar are not changed or fixed in any way. That didn't bother me; in fact I preferred it that way because it really made me think about Megan and how she sees life.
Secondly it must be noted that Megan doesn't use the words Down syndrome; she believes that "down" makes it sound extremely negative and so instead she uses Up syndrome and she encourages others, especially her family, to do so too.
Thirdly, while this book is written by a person with Down syndrome and she does tackle some subjects related to Ds, the message from this book applies to anyone. Life is all about your attitude and how you want to live it. It's clear that her attitude about enjoying life and its challenges has made her the person she is today. She says as much on pg. 4: "It's all about what you think of yourself, there's nothing else, just put yourself into it. Don't let anybody make you feel inferior". I think that's a message that anyone can relate to, regardless of their connection to Down syndrome.
If I could sum up this book in one word, it would be pride. Megan has a lot of pride about who she is and what she does. She says simply how smart she is, how much she enjoys driving, how she loves putting words onto paper, how fantastic she feels about writing a book, how much she loves her jobs. I don't think I've personally ever felt that way about myself and even if I did, I never said it aloud. She not only says it, but she means every word of it and wrote every word of it down. Her family seems to take a lot of pride in Megan too, based on the real relationships she has with her extended family--serving as maid of honor for her cousin's wedding--and how they treat her--she goes on adult vacations with her family, drinks beer and wine, and discusses hard topics like her grandfather being ill and wishing to see her before he dies.
When Megan discussed going to school, I was worried about her experience. I realize that Megan is more my contemporary than my child's; she is nearly 30 years old and I'm 35--when she was in middle school, I was attending high school. But I'm also a realist and I know that public schools and special education programs still have many miles to go before they truly educate everyone and educate them well. It definitely saddened me when she talked about not having any friends and no one wanting to sit with her at lunch. I am terrified of sending Owen to elementary school. I am so worried that with his lack of talking and communication he will be limited in who will play with him or want to be his friend. When someone like Megan, who writes and communicates well, has problems making friends, I have to wonder what will become of my boy. And worse, will he ever be able to tell me if someone made fun of him or excluded him?
One of my favorite parts of her book is what she wants to tell every pregnant woman about having a child (any child, not just those with Up syndrome, as she says): she wants them to know what her mother did for her (like homeschooling her in middle and high school when it became clear that the district wasn't doing its job), talk to these women about her thought process and how smart she is, and give kids an education. She hopes that parents will teach their children to have open minds which would make people look at Up syndrome most positively. An open mind about people who are different than you..........what a wonderful concept!
This book for me held a promise that even if someone has a disability s/he can still do great things. Owen will soon be 4--too soon to tell what his future will be. But I think the best thing to know as his parent is that he DOES have a future--it may not be the one that I dreamed about before he was born, but it will be HIS, whatever he decides to do or to be. Megan states that "people with different abilities can make the world fabulous"; she's doing it her way and I know Owen will do it too.
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You can get your own copy of this fantastic book here |
Reviewed by: Stephanie Sumulong
Blog: The Sumulong 3
Page: Facebook: The Sumulong 3
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