Last month was Autism Awareness Month, the one time a year when daily social media posts about autism en masse are socially acceptable and more welcome as often as they are posted, when blue light bulbs shine proudly from porches of homes with puzzle piece wreaths hanging on doors, schools and various public organizations and businesses wear blue on April 3 for World Autism Day, and make blank paper puzzle pieces available on which patrons are encouraged to write loved ones' names to display on the walls, and autism walks, fairs, and paloozas alike fill family calendars and public spaces. For all the good of autism awarness, for some, it can cause awareness overwhelm. And families living with autism still live with autism.
While the blue porch light "shines a light for autism" for passers-by to recognize the blue light as a symbol for autism awareness, the family inside that home is living their every day life as they know it. It's now a "normal" life for them, a new normal they had to discover, or are still discovering and laboring through. For everyone else who passes by and sees the blue light, it's a different life. It's life with autism. It's life with differences, and hardship, and any other adjectives they might come up with as they imagine that life. But for the families living with autism, it's just life.
I know many friends with kids with autism who don't always actively participate in all the autism awareness (AA) activities, because, as they say, "Our life IS autism awareness. I'm aware of autism EVERY. SINGLE. DAY." Others dive head first into all that AA brings, heading up walks and fairs and sensory egg hunts for Easter. The more awareness they can bring to their community, the better. There is absolutely nothing wrong with either of these mindsets. I have been a part of both camps at some point. When we lived in Maryland, we were very excited about participating in the autism walk on the mall in D.C. for several years. We even had t-shirts made and we raised money for a non-profit organization. We invited our church, family and friends to walk with us, and there was wonderful camaraderie when we walked together. I've taken blue puzzle pieces to restaurants and public places for people to write the name of a loved one with autism on it to display for autism awareness. I've done school presentations and social media "fact of the day" for the month of April. I volunteered at our church for the sensory Easter egg hunt.
Until now. It's not that I was boycotting autism awareness. I just didn't have that same enthusiasm I did the previous several years. We had a blue-lit front porch, and we still have the puzzle piece ribbon magnets on our vehicles. I've re-posted and shared autism facts on FB, but I hadn't really written new posts. Autism mom friends of mine created and hosted an autism palooza and other events, but I didn't go. It wasn't a hostile act of opposition or unsupportiveness; I just didn't do it. And when thinking about why I lack enthusiasm, I think I know why.
It's not that I don't care. It's not that I don't believe in spreading awareness. It's incredibly obvious that despite our best efforts, autism awareness is desperately needed.
That's the thing about living with autism. It's all a desperate need. My son is in desperate need of my full attention, especially if he has a meltdown. Teachers are in desperate need of better training and more support from their school administration and school board. My other two neurotypical sons are in desperate need of our parental attention too. My husband and I are in desperate need of alone time to strengthen our marriage. I am in desperate need of alone time with God to strengthen my faith and my relationship with Christ.
With so much desperation and so many needs, I can only do so much. I just can't devote all the emotional energy it takes to get excited about an autism event. Or several various autism-related activities, even as small as social media. These are not bad things. In fact, they are wonderful events. They can be fun. However, now that Sam is older and has gained so many skills he didn't used to have when we participated in these kinds of events, he's even more aware of his autism. Being around others with autism at an autism-specific event makes him feel even more different. Maybe that will change at some point, and maybe one day he'll actually enjoy it. But right now, he gets more frustrated being around other kids with autism because he doesn't do very well with how autism affects others. When other kids stim or script, or make noises, or whatever it is, it bothers him. We end up discovering we have to teach autism awareness to our own son with autism!
I think, too, that during those first several years after diagnosis when I dove headfirst into all the autism awareness activity, it was part of what I needed to cope at the time. The more I did, the more control I felt I had over autism. I know it sounds weird, but I don't know any other way to describe it. Now, here we are with an almost 12-year old with autism; that's 10 years of living with a diagnosis. 10 years. Nearly a whole decade. I think that, maybe, after ten years of fighting - for services, for funding, for understanding, for sleep - after ten years of learning to live with autism and it still being something we continue to learn to live with as our son grows into adolescence, the novelty, as such, has worn off.
I don't mean to sound cynical or apathetic, nor do I mean to undermine living with autism in any way. We humans like closure. It's why we don't like movies with open endings, unless there's a sequel that answers all the unanswered questions from the first movie. It's why we love to read good books that ends with answers about our favorite character. It's why the appearance of the words, "To Be Continued" at the end of the season finale of our favorite TV show evokes SOR, "Sudden Onset Rage." It's why the Hallmark movie channel sucks in so many willing victims every Christmas season - because those who watch know they are guaranteed a happy ending.
We don't really get a happy ending with autism, or any ending, for that matter. That is, we are not guaranteed to have "closure" with autism. It's lifelong. Maybe our kids will learn how to function and cope in society as close to "normal," so to speak, as possible. But they won't just wake up one day with their brains rewired in a neurotypical way. Autism isn't going to just disappear. Maybe it won't affect them as much as it does today, or when they were first diagnosed, but they will always have autism. It's not like an illness that you can fight against and treat with medication until it's all better within two weeks.
The whole point of this website, at least one of them anyway, is to prove to you that you are not alone. To encourage you in your life with autism or other disabilities. Are you overwhelmed by autism awareness month? Are you ready to take a step down and back off the starting block and take a seat in the bleachers for a while? It's okay if you do. Just because you don't want to head up or be an active participant in awareness activities—for any disability you may be living with, not just autism—doesn't mean you don't care. Taking a step back from public awareness might mean you are taking care of yourself and your family, and not necessarily worrying about all the other families who don't live with a disability to make sure they know what you do live with. Taking a break means you are focusing your efforts on other things that are equally as, if not more important than public awareness.
You can't do it all. Or, as they say, you can do anything ... just not everything. And certainly not everything all at once. Are you struggling with how to do your part in awareness? Choose one thing and focus on that. Do you love posting on social media? Come up with fun graphics or fun facts for the awareness month you would want to share about. Maybe even just one per week, not every day. Go to an awareness event, but maybe you don't need to be the one to head it up and find all the volunteers or decorate for it. Do you love getting involved in politics? Go to a town hall or community meeting with one or more ideas for the community to get involved with, such as encouraging neighborhoods or Town Hall to purchase blue porch lights for autism awareness month. Go to an awareness walk/event with your support group of church people, friends, and family. Choose to donate an extra $1 or more at the store when they run a fundraising campaign for a particular disability organization.
Do whatever you need to do to feel like you're doing your part, but also know that doing your part can be as simple as living your every day life with your family.
You kind of have a lot on your plate. Don't feel guilty because you're not joining in everything else just because you live with disability. No doctor or psychologist has ever given an autism diagnosis, then also given a prescription or imposed mandatory participation in all autism awareness events you never even knew existed prior to diagnosis. That is something you put on yourself. It's a choice. It's not bad to do so, but it's also not wrong not to participate either. Give yourself a break. Be more aware of what you and your family need to live with joy. If that includes an awareness walk, go for it. If it means taking a nap instead of walking, go for it.
Whatever you choose, just make sure to post about it on Facebook. You know—to encourage more awareness. ;)