True Heroes
It seems we are surrounded these days by “heroes” and people who are “strong” and/or “brave”. Those terms now are so overused – and misused – that it can be a shock to meet or know people who actually fit the definition of “hero” or “strong” or “brave”. I recently had such an experience. I was out to dinner with my family and some friends. As we were leaving the restaurant, we ran into our old neighbor who was having dinner with his two adult sons. Both young men are firmly on the autism spectrum. Their mother passed away from cancer sixteen years ago when these young men were only in their pre-teens. Sue Niederberger was a devoted mother and tireless advocate for her sons. At the time she passed, I could not imagine how Tom and his sons could deal with the loss of such a wonderful woman, wife and mother. Yet here they were, sixteen years later, and they were not broken and lost but thriving. I was struck by what a tribute that is to the groundwork Sue laid during her lifetime and obviously to Tom. I am dedicating this blog to the first autism mom I had ever heard of, the original if you will, Sue Niederberger and the family she was taken from, Tom, Bill and Patrick. As opposed to all the athletes, actors and actresses and media celebrities routinely lauded as “strong” and “brave”, these are people whose lives truly reflect real courage and strength.
Sue Niederberger deserves to be remembered and celebrated by the autism community. Her contributions were significant and groundbreaking. In autism years, Sue was 8 years ahead of me. I had never met her even though we lived on the same street. I was consumed with my young family and my terminally ill sister and she was consumed with ……… everything. Everything that is real and meaningful that is. Her health, her family and her advocacy. Even though we never met, I felt a deep connection with her as a mother of two autistic children. When we moved onto Pinetree Dr in 2000 Sue had already made quite a name for herself within the autism community. She was the mama that fought to have her kids integrated into public schools. She cofounded both the Autism Intervention Movement and on a National level the Association for Science in Autism Treatment. Through her efforts, treatment was made available to children that previously was not. This is amazing to me and speaks volumes about her determination and strength. With two young sons and fighting a relentless disease, I can’t even begin to process how much she accomplished in the years she was afforded. I’m told she was a Godsend to families struggling with a new diagnosis. Her outreach to others in need dealing with their devastation speaks to her compassionate heart and selfless character. She tried to cushion the harsh blow to other families after they heard the life altering words that she and I have heard twice now……your son has autism.
I did not have the good fortune to experience Sue’s friendship and expertise because she passed from this world a few months before we began our autism journey. Ironically, her autism chapter ended pretty much when mine began. Timing wasn’t on our side. There is no doubt she was the big sister I needed then and I’m not ashamed to say still need today. She seems to have been able to figure things out, something I just can’t seem to do. Her name was brought up to me countless times during those early years. She intrigued me. I wanted so much to be able to talk to her. Just hearing about her wasn’t enough for me. Donny had just started kindergarten at the same school Bill and Patrick had attended and had the same special teacher that was about to become my lifeline. That lifeline, Teresa, became the invisible link between Sue and I because Sue and Teresa had become the best of friends. She and Teresa had this autism mystery figured out and my sons were fortunate enough to benefit from it. When I feel overwhelmed and like throwing in the towel, I remind myself of her. Before the phenomenon of social media, before hashtags and catchy slogans, there was Sue. She is a hero in every sense of the word. She inspires me to be better and to contribute much, much more. Her amazing grace has left a timeless footprint in my heart right next to my sister’s.
I have had the pleasure to get to know Tom and I can’t express how happy I was to see him and his sons last month. It was obvious how happy he was to meet our Brian. He immediately suggested camps for him and assured me everything will be okay. Tom’s journey with his sons is one of profound success. One that all special needs parents hope and pray for. Until last month, the last time we saw him was two years ago when a group of us met for dinner. Tom was in the final stages of getting his adult sons into residential housing. He talked and I listened intently. He told me everything he was doing and gave me ideas of what I can be doing now. We talked about Sue’s efforts. I could tell he was exhausted but his positive take on everything is what I held onto and I could have listened to him all night. All I could manage to say was ….. you did it Tom. Sue would be so proud. I repeated that over and over that evening. I can’t even fathom how he managed those first years without her. I know how overwhelming managing autism is and I know what grief feels like and I’m not sure I could do it without my husband. Tom’s strength and quiet dignity shine through. The kind of strength that comes from within that people can’t see and the kind of quiet dignity that you don’t see often in our present loud and crass society. Like Sue, Tom is a hero. Handed more adversity and heartache than anyone I know, he not only accepted the challenge without complaint he conquered it. His children are happy and productive and despite his humility he deserves all the credit in the world.
I have watched Bill and Patrick from afar for 20 years. From young boys to grown men in many capacities throughout the community. I’m certain they were the light of their mother’s life. They brought her into the world of special needs and to say she stepped up to the plate is a drastic understatement. I would have to think the strength and courage she acquired throughout her lengthy illness came from looking at their sweet faces and into their beautiful eyes. It was her immeasurable love for them that inspired the creation of programs and support systems to ensure the best possible life for them and many others to follow. Bill and Patrick carried on without their mother and have grown into their full potential with a smile always on their faces. Bill and Patrick, like their parents, are heroes.
So, to all my fellow autism moms (and dads , too) it is New Years and the perfect time to raise a glass to pay tribute and remember an extraordinary and accomplished woman. Let’s remember and thank Sue Niederberger for her trailblazing efforts that paved the way for us and let her amazing grace serve as our example and inspiration as we begin a new year!
Cheers to Sue and to you!! Happy New Year…….I hope it’s your best year yet!!