If you’ve been following along this month, you may have noticed that I’ve been reading many books about Down syndrome. I’m building up a library. I have always loved to read, and when Ben was born, I started seeking out other people’s stories. I have quite a list of informational books and memoirs still to read. My Amazon wish list is looooonnng.
My new favorite new-mom book is called From Grief to Celebration: How One Family Learned to Embrace the Gift of Down Syndrome by Margaret (Gary) Bender. This bridges the gap between memoir and practical advice. It’s like having lunch with a mom who has been there and done that, who can encourage and give trustworthy suggestions.
Why do I like it? The other memoirs that I have read (A Good and Perfect Gift, Bloom, Road Map to Holland) all focus on the first two years of life with Down syndrome. Gary’s book has the wisdom of years behind it. When the book was published, Alex was seventeen years old. Gary writes about the challenges of the early years – of accepting the diagnosis and learning more – but she also addresses my other questions about the future – sibling relationships, school, etc.
Gary frames her story as a journey of words. She chose ten verbs to chronicle each stage of life with Alex. The verbs are: Grieve, Research, Incorporate, Promote, Include, Understand, Advocate, Expect the Best, Practice Healthy Skepticism, Plan, and Celebrate (a bonus verb).
“These past 17 years have been an unexpected and beautiful adventure. As with many unplanned journeys, stages must be traveled before acceptance is embraced.”
I think any new mom gravitates toward birth stories. “What was it like for you?” Gary’s story does not disappoint. She talks about her prenatal care, delivery, and thought process after receiving the news that Alex has Down syndrome. I grieved Ben’s diagnosis, and I appreciate that Grieve is the first verb Gary chooses.
The next few verbs lead the reader through Gary and her husband’s process of acceptance and then involvement in the greater Down syndrome community. She gives book and research suggestions, including books that she read to Alex and her classmates in elementary school. It was helpful for me to see that there are resources out there for more than just infancy and early childhood – as Ben grows, there are books about communication, nutrition, even sexuality.
“… The research we undertook was one of the many factors that moved us out of our grieving phase. The more we learned, the more I realized our lives would be fine – just like everyone else’s, only different.”“We found that by actively seeking opportunities to include Alex, whether they were art lessons, sports teams or school, what we were really doing was tackling Alex’s special needs. We made her part of our community and, more importantly, ensured we were part of hers.”
The last six verbs offer wisdom about moving forward. My questions: what will it look like to include Ben as he gets older? How do we pursue therapy? How do I know what therapies to focus on and when? Gary talks through her thought process as Alex grew. Her family has spent extra time and energy working with Alex on speech, and she explains why:
“Without basic language skills, many children are excluded from social interactions, which is the most important step in inclusion.”
Ben is one year old; looking ahead at all of the decisions we may need to make about his education is overwhelming! Thankfully, Gary writes simply and concisely about their choices. Her matter-of-fact tone makes upcoming IEPs (individualized education plans) seem far less intimidating, and her positive stories about Alex’s team of educators make me look forward to connecting with the staff at Ben’s future school. I also love how Gary writes about Alex’s relationships with friends at school and in Special Olympics.
I could write about every chapter in the book, but that would make this review way too long. Suffice it to say, that I learned something from each chapter in this book, and I wish that I could sit down with Gary and ask her about more. It's a short book (90 pages) with a lot of good information.
I highly recommend this book! I also highly recommend Gary's blog, The Ordinary Life of an Extraordinary Girl, where she posts her family and about Alex's life now.