Dreaming has not always been something I valued. More a waste of time than anything else is how it felt to me. Why fill your mind full of things you can’t have? It sounded more like the definition of a tease. Then this thing happened. See this boat? The green and pink one up above these words. Right up there. This is not exactly how I designed it in my mind but it is slowly but surely headed into the direction I have imagined. This one is nicely painted blue, green and pink but the one I have planned out is a pale pink and white with sparkles. It might have polka dots or stripes but I’ve not made that final decision yet. You could say I am silly and I’d be okay with that because imaginary villages are like that. They take a leap of faith and a dash of silly in order to reach fruition and suddenly, despite how I started out, I am good with that.
I work hard. Like other parents of children with disabilities, we are on duty twenty four hours a day, seven days a week. No time for sillies or day dreams. A lot of us even go it alone. Some of us are single, some are divorced, some of us are married but have spouses who are not yet fully immersed into the autism world yet. Some people jump in faster than others. It is what it is. It’s not always perfect but there’s no time to complain because the autism-merry-go-round slows down for no one.
At night, when I have survived my day with my three kiddos and their schedules and school districts and teachers and principals and highly egoed administrators who are not always as autism-educated as they claim to be, my children and I enter into our good night routine. With exhaustion weighing heavy on my shoulders, I tuck my kiddos into bed, we exchange kisses and good nights and then I wait another half hour or so for the boomerang child to pop back out of bed a few times before he really goes to be…for real.
After that last boomerang child pops up, it’s mom time. Let me say ‘mom-time’, my time off, is hard to come by. As a single parent of three, I run all day long. In all honesty, I can’t even pee alone. If it’s not a child knocking on the door, it’s a dog beating the door open with her head. The cat has even learned to open doors. No joke…our cat has some serious skills. I am not often alone and I am by no means around my peers on any given day. So, in those moments, when ‘mom-time’ rolls around, I sink into the quiet. I don’t drink and I don’t smoke so,mostly, after the kids go to bed I sit and enjoy the stillness, the lack of motion in our home and I finally let my guard down and relax.
The secret that we autism parents don’t speak of because we are too busy being strong and evolving from momma bears into grizzlies in order to advocate for our spectrum kiddos, is that we spend a lot of time alone. The kind of alone that is brimming over with kiddos and chaos but is void of grown-up-people or autism-peers who can offer a friendly, supportive voice amidst the stress and hard work. There are times when we are downright isolated. Tantruming or socially impaired kiddos make social lives with grown-up-people daunting. A lot of grown- up, non-autism-parent-peers like to point fingers rather than offer helping hands and that makes finding friends tough too. Play groups filled with perfect kiddos don’t often dole out invitations to our spectrum kiddos so we build our own little enclaves with the kindest people we can find in order to stitch together some sort of social interaction for our kiddos. And let me be painfully honest and say that the kind and tolerant people who fill our worlds can be few and far between. I’d like to say it is different but it’s not. It’s what makes our “good” friends all the more special. Unfortunately, though the autism world has whole heartedly embraced the concept that “different is not less,” the rest of the world and our communities and neighborhoods have been slower to do the same.
So, out of this hard work and self imposed isolation that autism often requires (because it takes every bit of energy we have to take care of and advocate for our kiddos) this thing happened. I went out on a limb, started a Facebook page and reached out to other autism parents. I named it Autism Sparkles. (Let me clear something up right now by saying we are not the “have a super sparkly day,” commercial kind of sparkle. We are more of the ‘I’m probably going to be knee deep in life’s mud puddle today so I better find a way to see some positives,” kind of “sparkle”.). And once I started this Autism Sparkles Facebook page, this other thing happened. People showed up. GOOD people. KIND people. KINDRED souls. People who get it. People who understand us. People who get me, as a parent. These people, sheerly because of their goodness, became the wonder souls.
Then this other crazy thing happened.
These people were more than “likes” on a community page. As it turned out, I LIKED these people a LOT. This kind of good souled parent who understands the struggles, the triumphs, the heartbreak and the fear that erupts out of the battle with autism are hard to find and these people were them. Normally it can take me a whole dissertation describing our past history, diagnostic history, autism history, and a history of our experience in order to explain an experience we have had because you cannot possibly understand the significance of what we are doing unless you understand what led to it. I will tell you it gets tiring.
And once these wonder souls showed up, this other thing happened. These people became friends. Wild stuff I know. I always thought friends were only the people who lived close or have known you for a long time but this is not that at all. According to those standards, I don’t know them at all but I like them a lot. I call the wonder-souls my sparkle friends. They call me Sparkles.
It’s crazy, I get that, but this kind of crazy is some pretty darn good stuff.
I get that it makes no sense at all but there is something unexplainably bonding about autism. The road is long and grueling, there are no answers and the autism road never truly ends. Perhaps we bond through emotional exhaustion. I am not sure. What I know is this… at the end of the day when I am tired emotionally and physically and I want to sit and chat about my day with friends and let loose in a safe and nonjudgmental place….these are the people I want to sit with. These sparkle friends, these wonder souls, these virtual strangers who understand, who get it, the ones who don’t need my back story or dissertations, the ones who share a collective understanding and understand with only a few words…are the ones I want to let loose with. These wonder souls already get me better than most people on my street. Better yet, I’d like to fill a neighborhood with these wonder souls.
And, that is where the boats from the village began. That was the want that paved the first street of our village. One dream wish…silly as it may be…the one where I wished I was heading out my front door and into my driveway to meet up and unwind, decompress after a day of battle… with my wonder soul ‘neighbors’.
It started with one simple thought….wouldn’t it be nice to live in a neighborhood where everyone was supportive and kind, where no one looked down their noses and pointed fingers because they did not understand that different is not less? Our village would be that kinder, gentler place. A place to gather with our baby monitors, our desserts and our warm drinks right outside our houses, with friends who have our backs and we could finally get that unwinding time and feel like we had been heard so that we could stop feeling like we are forced to be islands. With a little imagination and a few dreams we might be able to simply banish the very need for islands, for isolation for parents who feel like they have to be mountains to take care of their kiddos.
And then we took it a step further when I pushed the dream sillies one more step with the thought …wow…wouldn’t it be so cool if our village was near a lake and all us wonder souls could take out the boats and share a drink over some sunshine and solitude? And it’s just a given that when friends get together crazy things happen. In no time we were designing and painting boats together. We each decided to create our own color scheme. Mine is, of course, pink with sparkles. I’d like a pattern on my boat but I am still deciding between stripes and polka dots. One friend wants British racing green with multi sized dots. Another creative wonder soul has designed hers with pink butterflies while another color wizard has paired a hot pink boat with orange dots and a splash of sparkle. We have one neighbor who, with loyalty and dedication to her team, is sticking with Tennessee Volunteer orange and the requisite ‘T’ on the side while another autism wonder soul mom is beautifully choosing turquoise with faint yellow spots. My favorite boat belongs to my girlfriend’s son. He announced that his boat will be painted blue and it will fly so that he can protect the village from anyone who may want to hurt us. Another sweet wonder soul boat will be painted blue and will have “consider it all joy for autism” painted in brown.
I know what you’re thinking. It’s a little off and I understand your reservation but let me assure you, I’m okie dokie with that. Tough times call for tough measures and unexpectedly, I have fallen helplessly into some big time adoration for these wonder souls who bring sparkle and love to the village. So you can call it whatever you want. I call it necessary because, let’s be honest, it’s a crazy world out there. People don’t always do what they should and other people are capable of some down right crazy scary stuff so, in the meantime, until the world cleans up its act, I will build the village and we will paint our boats. Dream filled and imaginary, yes, but also, and more importantly, a model for how it should have been.
I believe everyone of us parents should be be able to live in a neighborhood and a community that embraces these children, that is supportive and kind but, for whatever unfortunate reason, we are more often isolated than we are warmed with support. From governments who cut funding, to school districts who refuse services to children who need it, to insurance companies who don’t cover services, to the parents of the perfect children who don’t yet tolerate differences… autism parents are reeling from the level of combat we are involved in every day in order to protect and educate our children. So we will build our village and paint our boats and we will fill a beautiful mountain lake with color and kindness and support and never again, inside the village, will any autism parent need to be an island because friends don’t let friends stand alone. And a little dreaming silliness goes along way to soothe a tired mind, build back up the patience reserves in parents and help a weary wonder soul find a smile. It’s all good in the village. How will you paint your wonder soul boat from the village?