So our little man is 8 today. Was going through old photos last night after he went to bed. I was overcome. Look at us, this little family, carving out our path. When S was born, cliché as it may be, I changed. A lot. More change than I had bargained for. Suddenly I saw the entire world so differently. I saw me differently. Reluctantly, I began to embrace the truth. None of this, not one bit, was about me. Sure enough, I would become someone new. Then when L was born, I understood why. God was preparing me for an incredible journey. L had a rough start from the moment he was born. I mean the very moment he was born and the doctor whisked his silent, grey little body to the ER nurses to be resuscitated. Then and there I knew. We had just been given the seemingly insurmountable task of defending our son from a condition whose name we had yet to know.

We never stopped fighting for answers. And it was, at times, a real fight. I’m talking, boots on, gloves off, I know I’m gonna be called a “b*tch” kind of fight. It meant standing firm in my gut instinct and rejecting the diagnoses of more than one prestigious doctor. It meant standing up to those who lacked compassion and were convinced we were crap parents and just had a “problem child.” It meant deflecting the ignorant judgments we received as parents, many of which came from tenured doctors and educators, folks who “should” have known better. It was an extremely lonely start to our journey, very isolating and at times desperately painful. Yet, by the grace of God and the unimaginable strength of my husband, we followed the golden thread. We didn’t stop. Because I knew in my heart. I just knew in my heart this force we were reckoning with had a name and, even if through mountains and fire, we would find it.

Seven years. After seven, tear-filled, end of our rope, hard fought, sleepless night, numerous incorrect diagnoses years, my instinct was confirmed. Autism. L is autistic. NOT Oppositional Defiant Disorder, NOT Bipolar, NOT Naughty Little Boy Syndrome. Autism. Autism Spectrum Disorder, ASD. On this spectrum, L falls on the High Functioning Autism portion. Or, Asperger’s Syndrome. (Which the DSM V no longer recognizes and I vehemently disagree, but that’s another post for another time.) Within a month he was also diagnosed with a tic disorder. Tics, like Tourette’s Syndrome Tics? Maybe… they don’t diagnose Tourette’s until a child has had symptoms without ceasing for over a year. We’re at the eleven month mark, still ticking away…we shall see.

(An aside: Frankly, I don’t care what we call these “conditions” my primary job is to ensure we are accurate in our diagnoses so that our son gets the best, most appropriate and effective treatment and education possible. I think we’re there now, for now. As most with ASD kiddos know, their needs ebb and flow and change with time. Which can be tricky in trying to stay on the same page as educators, therapists, doctors, etc. BUT, if the diagnoses is correct, you will at least be reading the same book. If you’re in a place currently where you don’t feel you’re on the same page, or reading from the same book as doctors, teachers, therapists, etc., put that puppy back on the shelf and keep searching!)

Had someone told me eight years ago I would have a son with Autism and tics, in my then tiny little mind, I would have crumbled. Out of fear and ignorance, I’d have caved in. But here we are, eight years in and I wouldn’t change a damn thing. We’ve finally come up for air. We’ve crossed this battle line to find God’s blessings are richer than could have ever been imagined. How He makes it ALL work together for good, I can’t know. We’re in a groove, in the zone. We’re rockin’ these quirks, we’re tickin’ all over town and we’re making it count!

These kinds of battles make a person who they are meant to be. My heart has broken a thousand times, only to grow bigger in order to accommodate the increasing love I have for these exceptional children with special needs. In our house we call them “differences” and we’ve all got ‘em. I’m of the humble mind that our differences, regardless of origin, don’t require special treatment and labels as much as they require compassion, grace and empathy. I’m not so naïve as to think everyone is going to understand my son, or have the willingness to try. Heck, the reality is some people don’t care at all and we’re raising him accordingly. Fair enough. But, that doesn’t change my marching orders. I’m determined the fire we’ve walked through won’t be for naught. In our family, the choice is now clear. We can cower in a corner beneath this hand we’ve been dealt, hide in false shame and useless secrecy, OR, we can get up, keep on keepin’ on and go full kimono! Of course I came to this conclusion after cowering in a corner, hiding in false shame and useless secrecy.

If, in allowing others to see a glimpse into our life with Autism and Tics, we can help peel away the shroud of misinformation and foster the conversation that needs to happen in defense of these kiddos, then we’re in. We’re all in! I know this is not the best decision for all families living with ASD, how much one shares about their own experience with ASD is a very personal decision and to be respected without question. For our family, my earnest hope is that we can come within a shadows reach of emulating the compassion, grace and empathy that I see in these exceptional children. I hope we make it contagious! I hope we can spread the truth that not every tantrum you may see in the grocery store is a “spoiled child.” Not every melt down you witness is an “unruly brat.” Not every outburst you observe is a result of “bad parenting” or a “behavior problem.” I used to think so narrowly. Not anymore. My ignorance has been painfully replaced with compassion. And, for those who can’t make that switch, or are unwilling to understand, then perhaps we can all just respectfully agree their opinion of me or my child isn’t going to rank high on my expansive list of priorities.

I don’t pretend for a second to have all the answers, or any answers. I just know not everyone with an ASD is like Rain Man. He, I believe, is the exception. What I do know is when I meet a child with Autism, I’ve met one child with Autism. Each of them different from the rest, with their own unique place on this vast spectrum. Each with their own means of navigating through. I know that for every child, every adult, every family touched by Autism, there are as many ways to navigate through. I want to be teachable to all of them, all of these brilliant, ingenious, fearless ways of walking this road.

Funny, I was so eager to teach my children all about life in this big ole world. Little did I know, they would end up teaching me. I’m not who I was. By God’s grace and a healthy dose of humility, I am not who I was. I’m beholden for every single messy bit of it!