I am sure this will not be politically correct.
Lately it seems I often am not. I simply speak openly and don’t measure my words or revise very diligently. Honestly, there are moments when I hear the autism elite speaking and I am not even quite sure what they are talking about. Those upper realms where the roar from fighting is so loud that children are eclipsed, is not a place I travel to. I am the grassroots. I am in the trenches. I am quietly fighting the good fight with my boy…one teacher at a time, one classroom at a time, one therapist at a time, one principal at a time, one superintendent at a time, one director of special services at a time, one school district at a time, one IEP meeting at a time, and one friend at a time. There are no armies behind me, no troops rallying beside me.
It’s just me and my boy.
My boy is thirteen. Many of you already know that but I repeat this for the newcomers. They need to know I am not talking about a five year old because when we were five, I could never have imagined we’d be in middle school, on the honor roll and in regular education full time. I could not imagine, in the days of two hour scream fests when he was slinging snot on his sweet kindergarten teacher, that we would go anywhere that was positive or good. He is thirteen now and we have been in this fight with autism for eleven years.
It’s just me and my boy…and we’re alone but we are winning.
In a crazy way, I am thankful we have remained independent. I am thankful we have not traveled the main roads or fallen into the popular trends. Mostly, I am thankful my son was diagnosed back in the later stages of the darker ages of autism. I am thankful we no longer live in the pre 70’s days of institutionalizing kiddos or the 80’s of pretty much still riding the fence and using the let’s-put-our-heads-in-the-sand philosophy. I worked in the group homes in 80’s and I know what autism and institutions felt like and I am thankful my boy was not born in those days. In the day of my son’s diagnosis, 2001, it was the dawning of awareness and the beginning of brighter days. The dawn was thankfully breaking but, even still, not many knew enough to be helpful.
And, NO, that was not a typo. I AM thankful my boy was diagnosed in those early days of autism awareness when nothing was really in stone. It was perhaps the wild west days of autism awareness when risks could still be taken. When envelopes could be pushed. When teachers and parents were willing to step up and say no to the recommendations of school corporations and the corporations were still fumbling enough so they turned a blind eye to the cowboys that we were. It was a time when seasoned teachers and principals named Kim and Cora were still in power and were skilled enough to say we’ll just go out on that limb and we’ll give the different approach a try. So many doctors and educators today sit in boxes. They sit in books, they think they understand a six letter word and don’t even yet realize the striations involved, the complexities, or the layers of texture and skill behind that six letter word that they are not yet privy to after graduating with their teacher’s degree. So many have not yet discovered that autism’s complexities and brilliance cannot be captured in a textbook and are more than words on a page. Autism has to be lived to be understood.
I am thankful we had a maverick of a teacher named Kim who said yes and stepped up at a time when the rest of the world walked away and said what we wanted was impossible. I am thankful we could plan his education without putting too much weight on dismal reports. I am thankful we had a principal with enough seasoning to say, I’m here, I will help, I’m not sure exactly how this goes but let’s see how this boy can grow if we all stand together. I am thankful that I did not immerse myself into the reports filled with “can’t” that relegated my boy to a life of nothing much. I am thankful that somewhere in my softness a backbone grew strong and I learned to say no and to walk away from the ones who had formerly been my guideposts. I am thankful for a family who saw the same glimpse of brilliance I saw, the sparkle that helped us see the light within the boy who was lost momentarily inside himself.
I don’t believe in curing autism. I don’t believe that a refrigerator mom, or a number on a scale, or the flu, or a food, or an aging parent are the causes for autism. I think there are a lot of different kinds of autism and I believe the causes are both genetic and environmental and as varied as the children who fill the spectrum. I don’t think there is a magic bullet or vaccine that will make it go away. I think healthy eating will do us all a lot of good but I don’t expect any diet will make his quirks fall away nor do I want them to. His quirks are home to me because I don’t believe he’s sick or wrong or broken.
I believe my boy is this glimpse of magic that has great strength and still holds marked weaknesses. I believe he is in my life so that I can help him grow those weaknesses into strengths. I believe I am the lucky one. I believe, no matter how politically incorrect it may or may not be, that God gave him to me on purpose. I believe God blessed me with this gift. Yes, indeed, I do and I view my boy as a gift and a blessing every single day.
Yeah, I guess you can say autism is hard but that’s relative too, right?
- I mean, honestly, being a young girl in India or Pakistan or Afghanistan or a lot of other places is hard.
- Being a 17 year old boy sent to fight in the trenches of WWI was hard.
- Landing on the beaches of Normandy in WWII was hard.
- Being a Jew in the Holocaust was hard.
- Being a parent to a child who has endured three rounds of chemo and is dying, well, that’s some hard stuff right there.
- Watching your spouse die is hard.
- Being a soldier and coming home from Vietnam in the 60’s and 70’s was hard.
Yeah, autism is not always a cake walk but it’s not that hard. Not really if you look at the big picture. Pity is a pit that is only as deep as you let it be and I try not to let myself step too close to it. It’s a slippery slope, you know? There are lots of harder things to deal with than autism and I wouldn’t trade autism for any of them. Yeah, there’s rough moments but, in the end, when the sparkles rise up, he’s worth it. Autism is worth it. Navigating the spectrum is worth it.
I don’t believe in magic pills or miracle cures. I believe in hard work every day. I don’t believe in breaks because now is the time to work for my boy and there will be plenty of time for rest when he’s older, when he doesn’t need me so much anymore. I believe in magic children who have the ability to refocus our attention on the good stuff, the important stuff, the back to basics stuff. I am better for having walked on this journey with him and I feel like I am the lucky one. I certainly believe the autism community could come together better but that’s a whole other subject. I don’t play in the circles with the autism elite. I stay in the trenches with my boy and work in the here and now, every single day, because half way or half hearted is not good enough for me.
It’s just me and my boy and yet we’re enough.
I take my place with the other families who get that, who are on the battle lines, and we find our cure every day with each other…having faith, keeping the hope and sparkle alive and being fearless as we fiercely hold the brilliance of autism up to the medical and educational establishment in an effort to help them SEE our spectrum kiddos for the radiant children they are. Don’t ever stop being that cowboy, that rebel that stands up. Don’t ever stop being fearless and fighting the good fight for kiddos who can’t fight for themselves because, in the end, that is the only thing that really matters. Because, truly, if we fail our children…nothing else matters. And, on the day when the fight is done and our kiddos can stand up for themselves, that’s the day we will all take that tropical vacation. On that day, we’ll sit peacefully in the sand and we will reflect on the goodness that comes from faith as we finally experience the decadence of watching our children from a distance as they live their lives. That is the only cure I want. I want to keep faith, hope and fearlessness alive in this battle against autism. Sparkle On, my friends, and thank you for your camaraderie!