Down Syndrome is one of the topics of my new book, The Mind of a Child. It’s the story of two women from two different eras who are both dealing with children with Down Syndrome.
I was led to write this book because I had an uncle with Down Syndrome. But I never knew it. All the time when I was growing up, my beloved grandparents would come for a week-long visit. I would be so excited when they would arrive and we all had such a good time. But some time during the visits, the mood would change. A heavy sadness would fall onto my grandparents and my father. They would explain that they had to go see my dad’s brother. When I would ask to go along, they would always say, “No, you can’t go. He’s not normal.” When I would ask what was wrong with him, I would simply be told that, “He has the mind of a child.”
I was a young adult before I put the pieces together and realized he had Down Syndrome. I finally met my uncle, who had been institutionalized for 60-years or so, and actually took him out for a drive, along with my grandmother. We then stayed for the annual update from all the professionals who worked with him, just like my character, Willa, did in the book.
I saw my uncle a second time as he was prepared for surgery to insert a feeding tube. He was aspirating when he ate and had had pneumonia from it. So as an elderly man, he lost the last, primary enjoyment of his life….tasting and eating food.
I’m so happy that children with Down Syndrome have such a different life experience now! I don’t blame my grandparents or my dad for institutionalizing my uncle. That was just a common practice during the 1940’s for families with children with special needs. My book helps demonstrate modern day practices and shows how far we have come, as a society.
I was led to write this book because I had an uncle with Down Syndrome. But I never knew it. All the time when I was growing up, my beloved grandparents would come for a week-long visit. I would be so excited when they would arrive and we all had such a good time. But some time during the visits, the mood would change. A heavy sadness would fall onto my grandparents and my father. They would explain that they had to go see my dad’s brother. When I would ask to go along, they would always say, “No, you can’t go. He’s not normal.” When I would ask what was wrong with him, I would simply be told that, “He has the mind of a child.”
I was a young adult before I put the pieces together and realized he had Down Syndrome. I finally met my uncle, who had been institutionalized for 60-years or so, and actually took him out for a drive, along with my grandmother. We then stayed for the annual update from all the professionals who worked with him, just like my character, Willa, did in the book.
I saw my uncle a second time as he was prepared for surgery to insert a feeding tube. He was aspirating when he ate and had had pneumonia from it. So as an elderly man, he lost the last, primary enjoyment of his life….tasting and eating food.
I’m so happy that children with Down Syndrome have such a different life experience now! I don’t blame my grandparents or my dad for institutionalizing my uncle. That was just a common practice during the 1940’s for families with children with special needs. My book helps demonstrate modern day practices and shows how far we have come, as a society.