A Message – What I wish the public knew about our family

Do not judge those who already judge themselves.

The hardest part for me about being a parent of children with autism is other people. I can stand up and speak publicly in front of a room of hundreds at work, but walking through the mall or sitting in a restaurant with the kids makes me anxious. I have had to work very hard on not caring what others think when the kids have a meltdown or scream into their hands for no reason. But people look, and people judge, and I fight to keep my composure.

I sometimes wish I could be more like our respite workers. They spend their days in classrooms with nothing but special needs kids and then they come to our house and help us navigate our own lives. When they go out I believe that they can separate the fact that these are not their children and for that reason, they just don’t care. To be clear, many of our workers are more qualified than I am to parent my children, but it is a gift to know so many really strong people who love our kids as much as we do.

This is also where my wife and I probably have the biggest disagreements. Being uncomfortable makes me get defensive when things happen in public. My first reaction is to leave, to hide, to move the kids away from those who choose to judge them. On the other hand, Amy, and our workers, would rather take it as a teaching moment and in some instances will escalate the situation just so the kids don’t believe they can get out of something they don’t want to do by crying. I wish I was more like this, but for now, I still am not comfortable enough to do what’s right at times.

This also applies to why Amy and I spend most of our time by ourselves and not around others. We have a certain circle of friends that understand the kids and in all honesty, they are comfortable even when Ashton comes up and sticks his nose in their chest and takes a big “sniff test”. In his way he is saying hello, to many, it will be very uncomfortable. Add some quirks like this to the fact that we still do diaper changes for an eleven and thirteen-year-old in front of guests, as it is all they know, and for some, it becomes too much. We often get pity, even though we just want acceptance.

Our boys have almost never caused harm to others. Ashton went through a biting phase, but to be honest I have been bitten by other kids in our family that are typical so this is not worrisome. If aggravated, they may kick the counter or bang their head on the wall, but aggression is not something that we have to deal with (hopefully ever). But when our kids who don’t understand personal space run up to a stranger this is always the first expectation, and I don’t blame others. In the end, our kids just want to play with others (play means chase and laugh) or get to know you very intimately (whether patting your head or smelling you). We have encountered many who understand, but I have also seen my wife struggle as parents watch from afar and gossip while they drink ten-dollar coffees and don’t know where their kids even are. I would rather be present.

I write again, not for pity. I write it to tell others that may come across my children or others like them. In most instances they want to meet you, they are excited to meet you, they are just showing you compassion and love. They don’t judge you based on looks, or actions, so please give them the same in return. And remember, even though the kids don’t often know they are being treated a certain way, you can bet there is a parent somewhere crying as they drive home.