I don’t know why, but honestly I’m having a hard time getting fired up for World Autism Awareness Day. I suppose it’s that we’re aware of autism every day, and we often aren’t quite sure how to speak in coherent sentences one day a year to the large populace who has little to no frame of reference about our children and our families.
I know this day really isn’t about us so much as it is for the rest of the world who doesn’t walk this path each day. It is a wonderful opportunity to reach people who are more likely to be paying attention. I suppose sometimes our awareness-raising efforts the other 364 days of the year leave me a bit weary.
Last year, I wrote a three-part “Be Aware” series that pretty much listed everything I thought people should be aware of. There’s Be Aware – For Parents, Be Aware – For Family and Friends, and Be Aware – For Everyone. Hopefully you’ll find them worth taking a look at.
We try to give our friends and family glimpses into our lives throughout the year. We usually aren’t dramatic about it, at least we try not to be, but we do try to give a realistic depiction of our lives with all its ups and downs. We celebrate and complain. We advocate and we lament. We cycle through the range of emotions from joy to fear and frustration and celebration frequently, often many times a day.
We look for opportunities for awareness all during the year. We tell our story to others when the chance arises whether it’s to educators, therapists, and doctors, co-workers, various people we run into at some function or another, or just random passers-by. We mostly do that to share that yes it is challenging but also that yes there’s much joy in our journey, we’re fairly normal people, and we get to discover wonders others don’t. I got to wear my Celebrate Autism shirt at the marathon, which got several compliments. I suspect at least some people saw it and gave it some thought, or at least I hope they did. I’ll even bite someone’s head off if they are being mean to a child. Not all awareness raising is gentle after all.
One bit of awareness in my life that I need to improve comes from the fact that often we are so aware of our own lives that we don’t pause to think about other parents like us and the unique challenges they face. Every family has a different story, and there is much insight and comfort we can offer each other. Raising our own awareness of this gives us opportunities to learn, feel understood, and grow in our solidarity with each other. Lord knows we need each other.
But that said, we often lack awareness of how we treat our own selves like dirt. We abuse our bodies by eating junk and letting our physical selves waste away. I became painfully aware last summer that if I didn’t stop doing that, I was in deep trouble. We keep pushing all of the fires and urgent things in our lives ahead of taking at least some basic level of care of ourselves. Often that is necessary, but at some point your body is just going to stop letting you run up that debt against yourself.
Some awareness-raisings are months and years-long projects like state-by-state efforts to mandate that health insurers cover autism. Not only do we have to raise the level of awareness among legislators as to why this is so important, we have to dispel the myths that stand in the way, such as how mandating coverage will jack up premiums, that is unless one really thinks that an increase equivalent to a Snickers bar is somehow jacking up.
Locally, we’ve spent much of this year (one of the projects that occupied me for several weeks) raising awareness in our school system regarding why increasing Pre-K special ed class sizes without adding teachers was awful. If nothing else, we raised awareness that people shouldn’t mess with our kids’ futures, we have really long memories, and we will not give up. That said, I think our work did make a positive impact on our school system, and several people gained some much needed insights.
We’re particularly aware that budget cuts are causing devastating impacts on local and state disability services. We have heard that they do not expect there to be any slots for these services for our J-Man or the hundreds of other people on the wait list at least for the rest of this year and maybe not for the next three. The usual 2-5 year wait list for services may go up even more.
Sometimes we can just practice random acts of awareness. Like today, Dale Jr. and I went to Stride Rite to shop for shoes for him. The extremely nice woman who was so patient and kind to our J-Man when we took him there a while back was working today. Dale Jr. had a blast today trying on shoes, playing, and running amok in the store. The J-Man however had a full blown panic attack the entire time when he was last there. She didn’t blink. She just patiently and calmly got us all through it. You know we’re all aware when someone at a business treats you and your child with kindness and respect. Make those companies aware that you are thankful for them and those individual employees.
Other times we have to grind it out with the systems and bureaucracies of the world. Often we have no idea what difference our actions make. We plant seeds and hope for the best. But I think no well-intended step we take is ever pointless. Collectively everything we do accumulates, building on each other’s efforts until something wonderful happens. Maybe it’s quick; maybe it takes a generation or more. So much of that is out of our hands.
Maybe what we can do today and every day is simply ask, what one thing can I do today? Can I make a difference to another family? Can I teach someone about autism? Can I spread a positive message? Can I just randomly act in kindness toward a complete stranger? Can I kick down a door that’s blocking the way of progress? Can I share a word of thanks to someone who has helped us? Can I be a little kinder to myself? This applies whether you have an autistic child, you’re a family member, you work with children, or you just want to be a kind citizen of the world.
Ultimately, if we act in kindness with an intention to make a positive difference for our children, our families, our communities, and our world, I believe that whatever we can do will matter. We might not know how and we may get precious little evidence that it did, but I think we can trust that good things do somehow come.
Today, maybe if what we just say is, Let me tell you about my wonderful child and how I want to make a difference in the lives of all children, that has all the makings of a beautiful day. And that’s how we build a future.