The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis Through Adulthood, by Jen Jacob and Mardra Sikora
Review by Anne Mancini, Executive Director and Trisha Oyos Stibbe, Parent
Down Syndrome Alliance of the Midlands, Omaha, Nebraska
Full disclosure! We know – and love – Mardra, and her son Marcus Sikora.
Anne: When I schedule a meeting with Mardra, I block out some extra time, because I know we are going to find more to talk about than what’s on our agenda. Marcus and I are in a book club together. I got to see these two in action when I attended an author reading of Black Day: The Monster Rock Band. They are joyful and fun to be around, but Mardra isn’t afraid to tell the hard truths. She is not apologetic about her choices and opinions. She is a well-educated and passionate advocate for Marcus and his peers. So I knew before I opened the book that there would be a lot of Mardra’s heart in it.
Trisha: Claire was only a few months old when I first met Mardra and Marcus. My husband and I listened to this power duo talk about advocacy and were so inspired. Seeing a young adult with Down syndrome being fully engaged and immersed in the “real world” gave both of us such hope about Claire’s future. After speaking to Mardra, my passion for advocacy grew, and I know it was due to her setting such a strong example.
Anne: The very first thing I appreciated about The Parent’s Guide to Down Syndrome is the advice to seek out a local Down syndrome association. As the director of the Down Syndrome Alliance of the Midlands, I have the privilege of watching my families welcome each other to the community and share stories and support. This book will provide that sense of community for any parent not quite ready to dive into a local organization or who unfortunately does not have one geographically accessible.
Trisha: My husband’s work causes our family to move quite often. In the next three years we will live in three different states. Finding the Down Syndrome Alliance of the Midlands was finding “my people.” There was no prefacing feelings, I met people who understand that sometimes laughing is the best medicine, and we compare and recommend physicians, therapists, hospitals, etc. Having a local support system has been invaluable. When I am about to lose my mind over this new life, I talk to the other moms, go to the get-togethers, and yes, even cry. Because these friends get it like no one else does.
Anne: Just like most organizations, this book features the voices of parents of all walks of life, with children of all ages. There are stories about hearing the news, breastfeeding, having more children, becoming a community advocate, and sending your child to college.
Trisha: Reading the birth diagnosis stories took me back to the day Claire was born. I thought, “So, it wasn’t just us?!” Other parents had experienced the same joy-combined-with-grief that so few understand. I was able to identify with all of those stories, good and bad.
Anne: In our community, we know that when faced with a diagnosis of Down syndrome, there are many things about which a new parent doesn’t even know yet what to ask. I was pleased by the explanation and discussion of topics such as the blue and yellow colors, school acronyms, and guardianship issues. Because it is presented chronologically, the information can be digested in the early days and referred to again later, or taken in bit by bit as the child approaches those transitions.
Trisha: The format of this book was easy to read and digest, given the vast amount of information. I read it all in one sitting and dog-eared several pages. While Claire is only 9 months old, it was still invaluable to read some stories of those with older children with Down syndrome. I don’t think one can ever be too prepared.
Anne: Trisha and I are proud to recommend this book to parents of children with Down syndrome. We think wherever a parent might be on the journey, a connection to information and other parents’ stories is extraordinarily helpful and can be found in these pages.
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