Nothing had prepared us for this moment. Every check up confirmed a healthy and normal pregnancy. The labor and delivery went relatively smoothly. But about two hours after we held our newborn son for the first time, we found ourselves surrounded by a team of doctors and nurses with serious looks on their faces.
Your son is exhibiting characteristics consistent with Down syndrome.
I remember looking down at my wife Josie as she held Griffin in her arms. She looked back up at me with tears in her eyes and a look of desperation on her face. The room began to spin as we tried to absorb the news.
That night I didn’t sleep much. I tossed and turned wrestling with the fear that my life was over. The one time I fell asleep, I awoke in a panic as questions bombarded me. What will this mean for our family? How will we be able to afford all the medical bills? Will Josie and I ever get to be empty nesters? (I was looking forward to that.)
I don’t remember much about those first few weeks. It was all a blur.
But one thing I do remember was a dynamic I experienced pertaining to all my fears. When I thought about Down syndrome apart from Griffin I experienced panic-level fear and anxiety, but when I held Griffin in my arms and was present to him all my fears disappeared.
Holding disability in my arms removed the fears about disability that were swirling in my mind.
We’ve been parenting Griffin for ten years now. This dynamic still captures my own transformative journey in relating to disability. I’ve experienced a transformation from fearing those with disabilities to embracing those with disabilities as dear friends who have come to enrich my life in countless ways. And while there’s much I hope I’ve given him, the truth is that he has given me much more.
A Few Common Pitfalls to Avoid the
I want to be patient and grace-filled knowing that it took having a son with Down syndrome to transform how I see and relate to those with disabilities. At the same time, raising Griffin has also made me acutely aware of how much we all need to experience a transformation in this area. Interacting with and watching others interact with Griffin has often been painful.
Over the years I’ve noted several common pitfalls we’d be wise to avoid.
The Pitfall of Prejudice
Our society has undeniably made major progress toward inclusion. The practice of institutionalizing individuals with Down syndrome began to significantly decline in the 1970s and has been gradually replaced with community-based support and inclusion. All of this is to be greatly celebrated. Yet the truth is that we still have a long way to go.
Despite the fact that inclusion has become a widespread cultural value, those with disabilities still experience exclusion, prejudice, and bigotry.
Just a few weeks ago we took Griffin to an appointment with the middle school band teacher to explore instruments that Griffin might be interested in playing. Every child transitioning to middle school gets this opportunity. As an aside, music is also Griffin’s passion. He has great rhythm, has learned most of his vocabulary through song, and has music lessons once a week for as long as we can remember.
When we got to the appointment, the music teacher interacted with Griffin for about ninety seconds (not the full fifteen minutes) and then told us Griffin would be a better fit in general music. She then proceeded to her next appointment with another prospective student, one without a disability.
Let’s give this music teacher the benefit of the doubt. She likely did not have any malicious intent nor was she consciously aware that her actions were discriminatory. However, it is important for us to be able to see and name what transpired in that moment.
The teacher, rather than giving Griffin the same time and attention as every other student, dismissed Griffin while then giving her attention to a more capable student.
This is the first pitfall to avoid. We must learn to be able to see and name discriminatory attitudes and actions within ourselves and others so that we can be part of creating a more equitable culture.
This is a lifelong learning process that we should approach with grace and patience for ourselves and others. In our next post in this series, we’ll look at other pitfalls and describe our vision for going beyond inclusion toward true friendship and community, just as Jesus intended. Check back in a couple of weeks for part 2 of this series.
