My first son, Noah, was born on March 12, 2000 with Down Syndrome. The tests administered during pregnancy for Down Syndrome and other conditions somehow didn’t indicate Downs – so, yes, Noah’s condition was certainly a surprise. Frankly, for the first 24 hours Noah’s condition was a dramatically negative surprise to me and to my wife. Neither of us were prepared for the news. For me, there was a temporary sadness in thinking about all the experiences that I assumed Noah wouldn’t be able to enjoy or fully appreciate during his life.
My first reaction was to order every book on Amazon.com I could find on Down Syndrome. Busy-ness and focus allowed me to deal with the sadness. But what really got me moving on and fully embracing Noah in a very short time frame was a conversation with a dear friend. When I expressed my sadness to him about all the life experiences Noah would be missing out on, he gently asked me whether that sadness was based on my expectations for Noah or on Noah’s eventual experiences. His point was that Noah could very well have a happy, full life (on his terms, rather than my expectations), and that perhaps that was something to appreciate and possibly celebrate. That conversation helped prepare me to fully accept and embrace Noah.
Later on, another surprise emerged. At around the age of three, we noticed Noah became less vocal and less interactive which prompted us to have Noah assessed. Full evaluations confirmed autism.
There’s an article that I think is given to many parents when their children are born with developmental disabilities. It’s called something like, “Welcome to Holland.” The analogy goes like this: A family plans a full, fun vacation to Italy, but the plane gets diverted and they end up in Holland. The point is that while Holland may not be as fun, beautiful, romantic, and interesting as Italy, it still has its charms – windmills, dikes, wooden shoes, and more…
I’ve thought about that article many times over the years. And I’ve thought about how I’d retitle and rewrite it. I think I’d go with the title: “Welcome to Life.” Having Noah has been a blessing. And a blessing. And a blessing. Did I plan” for Noah? No. But neither did I plan for the three other boys who became his brothers. And they are each wonderful, challenging, delightful, puzzling, loving, patience-testing, and inspiring in their own ways.
But Noah is different. He’s more the 1st, 3rd, 5th, and 7th on that list, and he just “is.” What I mean is that Noah’s the boy that most makes me appreciate the smaller things – the most important things in life. Everything comes more slowly with Noah. But it does come. And when it comes, you really, really, really appreciate it. When at 12, he walked up to the counter and verbalized “chocolate ice cream” for the first time, I appreciate it. When at 14, he strolled over to a friend and for the first time gave him a high-five while loudly shouting, “Hey Buddy,” I appreciated it. And when at age 16 he started to say “thank you” – before and after a request, I appreciated it. Noah is 18 now and likes to dance extemporaneously while shouting “DJ Khaled.” And I continue to appreciate every moment like this.
People– even parents — have all types of different reactions to, or experiences with special needs children. I fully understand that having such a child can be challenging, scary, perhaps even terrifying. I have also witnessed/experienced the uncertainty and awkwardness that both children and adults can have when encountering special needs children. It’s all very understandable.
However, what most people that encounter our family don’t realize is that my experience with Noah has been wonderful. He is both my most playful child and my wisest soul. He is a source of immense tranquility to me. No expectations. Just experiences. Noah is unconditional love to me. And, for that, I am extremely grateful.
As a parent of a special needs child, I sometimes get asked if there is anything friends can do to help. There isn’t really. At least, there’s nothing special you need to do. Just be yourself and, if you want, make an extra effort to engage with Noah. I have this friend, Darlene – a neighborhood Mom with two active sons of her own. She once told me that she was going to do everything possible to get a hug from Noah one day. Noah is usually non-verbal and doesn’t interact with many people. Darlene had her work cut out. But she persisted. And she succeeded! Noah gave her a hug and that moment felt magical for Noah, for Darlene, and for me!