Ms. Barcus, the parent of a child with Down Syndrome, sent us these thoughts on life with her daughter, what The Arc means to her, and her new book.
I have recently published my first book about Lisa. She is my youngest child, and she has Down Syndrome.
Lisa’s story, Snapshots of Lisa: A Candid Look at Down Syndrome and Snippets of Lisa’s Life, is not unique, but it is a story of hope for others. To come to grips with having a child with a disability, I began note-taking and journal-writing when she was born. This quickly turned into positive stories about Lisa. I called it therapy.
When Lisa was born, some of the first organizations we joined were The Arc of Central Nebraska and The Arc of Nebraska. We are still members today. The Arc was a welcome and significant part of our lives, giving us a place to learn from others who had a child with Down Syndrome. Parents we met helped us by educating us about our child’s potential and educational services that would benefit Lisa.
I wrote this book to give people a snapshot-view of what it is like to have a child with a disability and show that it can be rewarding. I want readers to know that all children are more alike than not, and being a parent is just that: being a parent. Snapshots of Lisa is a lighthearted journey of short stories for people with a child in their lives. This first book is made up of stories with a positive outlook on having a child with Down Syndrome. It is about stretching, growing, and learning about your child and yourself.
Whether the child is short or tall, plain-looking or cute, average or smart, they are all children who most likely will experience similar milestones. Lisa learned to walk, but she was much older than usual when she accomplished this. Lisa was short, but that didn’t stop her from climbing on furniture or learning to ride a bike. Lisa was the average “baby” of the family who simply grew up on her own schedule. She was always the best she could be, and our whole family learned and grew a lot with her, especially me. My belief is that there is a future for all children, no matter what abilities or disabilities they possess.
In the book, I write anecdotes of Lisa’s development and how she learned to crawl on her way to walking, running, and riding a bike. I recount her stories because she was like any other newborn learning all those firsts. As the book moves into Lisa’s early grade school years, there are articles that range from meeting new friends, getting haircuts, losing her first tooth, and engaging in sporting activities. It is typical stuff about a not-so-typical child.
Writing about Lisa was healing for me. I was better able to define my feelings and to use what I knew to help Lisa. I now realize that this is my time to share with others not only the everyday stuff but also the unique situations I experienced by having Lisa in my life. I believe I have revealed the truest picture of life with Lisa. I hope you enjoy the book, and, if you like it, please tell others.
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