At night time, after the house gets quiet and everyone has gone to bed, my mind races and I sit awake by myself thinking about my family and our life together. I think about the hands that we’ve all been dealt, good and bad. I think about my view on autism, life, and the world and I think about how much it’s changed and evolved over the years.
Tonite I’ve been thinking a lot about the different faces we have met along this winding path.
Our amazing, handsome, thriving baby boy Bug (who isn’t quite a baby anymore) is twelve years old now so we have lived through quite a few years of experiences with parents and experts in the autism community. I wish I could tell you all that everyone has been fantastic along the way but I’m a ‘keep it real’ kinda momma and writer so in true Rockin Mom style, I’m gonna just lay it out exactly how it has all happened.
In the beginning of our journey I had this trumped up, fairy tale fantasy in my head that all the autism parents, doctors, and families would instantly just bond together for the sake of the cause and for the sake of our beloved family members who have autism. I am really sad to tell you that in our experience, it hasn’t always been that way with some of the people we’ve met along the way. I am also sad and ashamed to tell you that there was a time that I feel like I was a part of that very problem.
In the earlier years after Bug’s diagnosis, looking back, there were situations where I know I let my emotions and personal issues get in the way of my advocacy and my ability to help others. That just plain sucks no matter how ya slice it.
The big unspoken truth is, people are people and in this life with autism, a lot of us are still very emotional and raw. I was one of those people and some days I still am. I still feel hurt and wounded some days but mostly these days I feel like a kickass fucking autism warrior!!! :)
There are those people in our lives who aren’t on our same journey but they cross our path none the less. Even in the asd world, everybody isn’t always gonna have your back. It sucks, but it’s true and it’s what’s real.
There’s one big experience in particular that comes to mind to better explain to you what I mean.
Still to this day it burns to the corners of my mind like a brand. It was our first autism screening. We waited for almost a year to see a big name doctor who yawned through our whole appointment and ultimately told us Bug wasn’t autistic because he had a sense of humor and was attached to me. Thanks for the diagnonsense, asshat. We waited without answers, on edge, for MONTHS and MONTHS for 5 minutes of this man’s time and he dismissed us and suggested we put our child on totally unnecessary meds. We were absolutely crushed and devastated. We had been on hold for all that time and we just felt defeated and helpless. We wasted precious time.
The face of someone who didn’t care enough even though it was his job.
Before I got serious about my website I was in a sorta autism ‘clique’ online with some VERY intelligent women and a few men in the asd community. They were all extremely well versed on all things autism and I was more than happy to soak up every ounce of information they could offer me and share our experiences and knowledge in return. I felt I had made some real true friends who understood my life. When I finally launched rockinmomsworld.com everyone was very supportive and seemed to be genuinely excited for me. Several of the people in the ‘group’ knew I had been working towards a degree in graphic design and was finally achieving my ultimate goal with launching my site, but after I began to gain a little attention I noticed my little ‘clique’ began to quickly disappear. The more popular my site and my Facebook page became, the fewer ‘friends’ I had in my little online asd clique. Along the way I’ve come to understand not to take it personally. There’s a lot of competition where websites and blogs are concerned, even in the autism world. To some people, the cause just isn’t as important as personal success. It’s not something I understand and I don’t think I will ever understand it but it’s something I’ve learned to come to terms with because based on other experiences I’ve been through, I have a good idea it’s not changing.
The faces of the ones who walk your path, but who aren’t really on your side.
There have also been a lot of ‘snake charmers’ along the way as well. Ya know, the kind of people who swear they can help but run the first time you ask a question they can’t answer. There have been people who supported us until we disagreed on therapy methods, diet, etc.
People who looked down at us in stores and restaurants and told us to ‘control our kid’. There have been people who have mocked me and tried to hurt my reputation when I disagreed with something based on our own personal experiences. There have been professionals who have treated us like second hand citizens. There have even been people who have gotten extremely mad and hateful towards us for simply not doing things the way suggested to it.
The faces of the people on the other side of bridges I’ve burnt.
The autism world is still the world… It almost feels like an exclusive biodome we’re all living in sometimes but in all actuality that isn’t the way it works. We’re still in the real world and there are still the faces of assholes, liars, cheats, and thieves.
Another unspoken truth of autism is how much the other people in the community make up for the assholes, liars, cheats, and thieves. There actually ARE some of those fairy tale fantasy people who are always there for you and have your back! There have been people in the community who have lifted us up when we really needed them. There have been people who have dedicated their time, their sweat, and their love to my child and so many others. There are TRUE ANGELS in the community who are instrumental in the progress of how we all view autism and our loved one’s lives.
The faces of true, real life heroes. The faces that keep me going.
…Brings to mind one of my most favorite quotes that my regular readers have definitely read here before- The sweet just ain’t as sweet without the sour.
So with that said, today I thank all the faces we’ve seen along the way because you’ve lead us to here.