What are some things that have surprised you about Down syndrome?
I have been surprised by the optimism. By the hope. By the anticipation of the future.
When we gave birth to Jake, the truth is that I knew next-to-nothing about Down syndrome. To make matters worse, what little I did know was outdated, antiquated material born out of naivety and lack of proximity to anyone with a disability.
Imagine my surprise, my shock, and my delight, as I began to learn from others who were further along in the journey. As I began to understand that our medical advances, our early intervention strategies, our increased knowledge and understanding, and our society’s shifting attitudes towards disability and inclusion have changed the prognosis, the quality of life, and the acceptance of individuals with Down syndrome. There is hope today.
I have been surprised by the community.
I have been blessed by the community we have already experienced within the world of disabilities. From on-line communities of people who can ask questions, glean information and advice from each other, and encourage and spur each other on. To bonds that have formed between parents who attend therapy or early intervention together with their children. To the random strangers who will approach us to chat with us about Jake, always interjecting with a story of how someone with a disability has also touched their lives. We are blessed in our lives with a great community of family and friends, but this distinct community was an added, unexpected blessing.
I have been surprised by the variance.
I have heard of adults with Down syndrome achieving many milestones, some more than the average “typical” person: getting their drivers license, going to college, getting married, living independently, having a job and a vocation, becoming influential individuals who leave a great mark on the world, becoming spokespersons, having acting careers, and the list goes on and on.
I have also heard stories of those with Down syndrome who are further behind on meeting milestones: some are non-verbal and never learn how to communicate through speech. While many live independently or in assisted living situations, others continue with group homes, or at home with their families.
The variance, the range, the span of how Down syndrome can affect an individual, has been surprising to me. I have learned that there are many things that cannot be taken for granted, such as speech. That I will continue to push Jake to reach his full potential, but that I will also recognize that this measure of “full potential” looks very different for each individual.
And lastly, I have been surprised by the normalcy of life.
I don’t spend all day, every day thinking about Down syndrome. In fact, there are many days it doesn’t cross my mind at all! I treat both of my children the same. I love both of my children equally. I attempt to create memories, to teach, to instruct, to model, and to provide a safe and loving environment for my children. I am on the same journey as any other parent. And that, my friends, is comforting.