Rating: 4 stars
Note: As stated under the Source (above), I received this book for free from She Writes Press via NetGalley. I pride myself on writing fair and honest reviews.
Review: Mikey was born prematurely in a time when NICU’s simply didn’t have the knowledge and advancements they have today. Who knows if things would have been different for her if she’d been born a few decades later. Maybe her sight could have been saved, her brain damage avoided. Maybe things would be no different at all. Maybe she would have gotten an autism diagnosis and the critical help that goes along with it, improving her quality of life and those who cared for her. Most likely she would not have found herself forcibly institutionalized by the state, torn from her family and the only home she’d ever known, poorly placed, misunderstood, and repeatedly abused. And though, under any circumstances, her family would have been affected by her plight (it seems unlikely she’d escape the circumstances of her birth unscathed), if she’d been born today, or even a decade ago, their experience could have been vastly different as well. This is what I kept thinking as I was reading this book. How much difference a few decades makes when it comes to medical advancements. But Mikey’s circumstances are only part of this book, the meat of it is really about the impact on Mikey’s family, her sister (the author) specifically, and that is the primary reason I was interested in the book.
As the mother of two children with autism, I feel especially connected to these types of stories. I read about Mikey, and I think of my children, of my one child who is more profoundly affected (though nowhere near as affected as Mikey), and how lucky we are to live now instead of then. I read about Terry, and I think of my other children, and all the ways in which their childhood is different because of their siblings with special needs. And Mikey and Teresa’s parents, particularly her mother…I don’t know that I could have held it together the way she did, forged forward, found outlets to work through it all. It’s amazing what people are capable of. But I digress…
In the autism world, we are fortunate enough to live in a time where, despite lots of unanswered questions, things are being done – more and more studies, more and more discoveries, different types of therapies, well-educated pediatricians, more community support, and you could spend years reading books about how to deal with autism, how to live with it, how to help your child with autism, etc. And the number of firsthand accounts of living with autism are growing as children with autism flourish into adults living with autism. All of those books are helpful and insightful and needed. But I still don’t feel there is enough focus on the siblings of special needs children.
There are stories in magazines and newspapers and online zines, etc., but it is a very different thing to view a life through the lens of the person who lived it. That’s the kind of narrative that breeds understanding and empathy and hope. This book doesn’t offer is a list of things to do necessarily (though the author provides lots of resources for helping siblings at the end!), but you get a sense of what it must be like to be the sibling of someone who has exceptional needs, how it affects their outlook on life, their experience of the world, their view of themselves and their own value. Those are invaluable insights.
And Ms. Sullivan’s voice is so authentic and honest. She berates and blames no one. There is no sense of anguish or anger, no hostility or resentment, and only a healthy dose of regret, absent of any real guilt (healthy!). It’s a simple, but deep reflection on the past, how her childhood happened, what she didn’t come to realize until later. She was troubled herself, maybe would have been regardless of Mikey, and eventually found her way out, to a life that is rewarding and content, ultimately choosing a career that she might not have found herself in were it not for her sister.
While it’s clear that the path of her life was steered, in many ways, by the presence of her sister in her life, it is also abundantly clear that she is happy with where she is and owns her part in her past struggles. And in writing this memoir, she shines a lot on some of the missed opportunities, the things which her parents could have done differently that might have helped her through a challenging childhood.
I’d love to see more books like this.