I have a confession:
There was a time when I felt ashamed of the Munchkin’s ASD.
Now, before you call out the lynch mob, let me give you a little background…
The Munchkin wasn’t properly diagnosed until he was 7. Looking back, he had traits I should have recognized, but he didn’t have some of those more “classic” signs that might have set off a bell for me. He was social. He was cuddly. He didn’t have OCD tendencies like stacking things in patterns and lines. Even though I recognized the pigeon-toeing and the lack of eye contact and the verbal delay, it didn’t add up. His dad and I split up when he was 3, and then his dad was deployed to Iraq for a year. (If you know anything about military deployments, then you have some idea of how difficult a deployment is… not just the absence, but the reintegration upon return.) While we were still in the reintegration process, I survived a date rape and sexual assault; of course, I didn’t share this with my then-five-year-old… but I could sometimes swear that he’s empathic. I know he knew somehow that something was wrong. He may not be able to put a name to an emotion, but he certainly picks up on the subtle energies of the people around him.
So, how exactly does a 3- to 5-year-old child cope with stress? It was these very big things, coupled with Munchkin also having “hidden asthma” that took some creative investigative work to diagnose, that delayed us figuring out exactly what was going on in that little brain.
I remember the day Dr. K. told me for certain. It was surreal. I didn’t really absorb it right away. And even then I knew the Munchkin’s father wouldn’t accept it. How was I going to handle this? What would his peers think? Was he going to be labeled? *gasp!* Your child being “labeled” is supposed to be the worst thing that can ever happen, right?
So for the first couple years, I was discreet. I shared with his teachers, of course, and the principal. I’ve been lucky enough to be able to keep Munchkin at a small private school; this has allowed him much more personalized attention in these early years. It wasn’t until two years ago that I realized perhaps, in this case, discretion was NOT the better part of valor. Two things happened that began to change my mind.
The first was seeing a now-famous TED Talk by Dr. Temple Grandin. Though it was recorded in 2010, I was just getting into TED around a year after the Munchkin was diagnosed in 2012. I listened to this brilliant scientist say:
“We’ve got to think about all these different kinds of minds, and we’ve got to absolutely work with these kind of minds, because we absolutely are going to need these kind of people in the future.”
This well-educated, well-spoken, highly regarded, brilliant, AUTISTIC scientist who had already left an indelible mark on the world was telling me my son had a future.
Of course, I knew that. But when we first heard “autism”, the future I had envisioned changed. I didn’t know what it would… COULD… look like. I was lost. But then, Temple Grandin reminded me that not only did my son have a future, but that his mind is NEEDED in this world.
That started turning the tide for me. I began to read, and research, and start re-framing the way I thought and spoke about our new narrative. But I was still being pretty discreet about it.
Until the day the Munchkin came home from school in tears.
Unlike a regular “rough day”, this time he said, “Mommy, [Little Girl in my Class] told me today that I wasn’t going to my school anymore.”
“Well, why did she say that?”
“Because her mommy told her that. Her mommy said that I get special treatment, and that nobody wants me there, and I don’t get to go back.”
…*cue awkward pause whilst I scooped my jaw off the floor*…
This is one of those moments that every parent dreads. You know, deep down inside, that one day you’re going to have to deal with one of those climactic “school situation” moments just like on tv, and you imagine yourself handling it like June Cleaver instead of Roseanne Barr, but something goes wrong and you all end up on Oprah.
Fortunately, I managed to be calm and non-confrontational. I spoke with the teacher (who was equally shocked). But it was then that I realized that, by not disclosing my son’s truth, by downplaying our situation, I had created another problem. And worse, I was sending the message that my child wasn’t good enough.
And there it was. The light-bulb.
Ever since the Munchkin was little, he’s been trying to please his daddy, and nothing is ever good enough. That’s a novella for another day… but suffice it to say, I suddenly realized I was failing at being his advocate. And it was time to step up.
My first step was a letter to all the other parents in our class. Then social media and my official “coming out” as a spectrum mom. And people were shocked.
What? How long? You can’t be serious…. But he talks. He goes to a “regular” school. Are you sure? Maybe you should get a second opinion…
Fast forward three years… and let me answer some questions from our journey thus far:
- Yes, we’re sure. The Munchkin has high-functioning autism spectrum disorder (formerly known as PDD-NOS, or even mild Asperger’s). He’s not mean, aggressive, stupid, or being shown preferential treatment.
- No, I’m not the one who diagnosed him, and No, I don’t need another opinion. I am very comfortable with the opinions of his team of 3 MDs, PsyD, 3 BCBAs, ST, OT, LCSW, and 6 (count ’em, SIX) ABA therapists who all have come to the same conclusion: Munchkin is on the spectrum. He also has asthma, ADHD, and generalized anxiety disorder.
- NO, I do not for one fraction of a second believe that his autism was caused by vaccines. That theory has been debunked, and the quack who wrote it disbarred. Further, even if vaccines DID cause autism (which they DON’T), I would much rather my child be autistic and alive, than die from some common preventable disease. Autism is not a death sentence. Communicable diseases can be. (And don’t even get me stated on herd immunity.)
- Yes, the Munchkin is on several medications. No, not a single one of them is “for” autism. He is treated for asthma, allergies, and ADHD, and we manage everything else with behavioral intervention (plus coffee, patience, and lots of trial-and-error).
- No, I am not “loud and proud” about my son’s ASD because I’m showboating, fishing for sympathy, grasping for the spotlight, or suffering from Munchausen’s by-proxy (and yes, I have been accused of ALL of those things). I am outspoken because I am not ashamed of my child. He is beautiful, smart, funny, curious, and has a heart the size of the Yukon, and I love everything about him. I do not want him to ever – even for a moment – believe that I don’t love and accept him for who he is.
Do we work on social skills and behaviors?
Do I encourage him to try new things, try to manage his sensory responses, and hold him accountable for his actions?
Damn right, I do.
But I also forgive. I listen. I try to put myself in his shoes. I learn. What works for other kids doesn’t work for THIS kid, because he is different. NOT LESS. Just different.
A funny thing happens when you start being vocal about something that is stigmatized. Eventually, someone is going to slowly, maybe even in a whisper, raise their hand and say, “Me too.” This is the kind of discourse that my rhetoric professor would tell you has the power to change the world, because lack of discourse is what creates that stigma in the first place. Two of the most humbling experiences of my parenting ‘career’ have been the moments when two other moms of small children told me that our story – that me speaking out and standing up for my child – helped THEIR children get properly evaluated and begin to seek early intervention.
Which brings us to World Autism Awareness Day. This year, for the first time, the Munchkin is at a place where he’s starting to grasp the concept of autism. To understand that his brain works a little differently than others. Unfortunately, he also gets a lot of mixed messages. I know that sometimes, he doesn’t feel safe to be himself.
So it was time. It was time for me, and our family, and our “village” to stand up and be proud. To show the Munchkin how much he is loved just as he is. That he makes people happy, that he IS enough. Over a couple of weeks, via blog and social media, I asked folks to Light It Up Blue with us on April 2nd, and to send us their photos so that I could show the Munchkin how many people believed in him.
And I was not disappointed:
Just a few of our wacky “tribe” who wore blue to support the Munchkin on World Autism Awareness Day 2015.
The Munchkin loved every single picture. He kept coming back to the computer saying “Mom, show me that one again!” This community, our little “village”, didn’t just “light it up blue”… you lit up my kid. To say I’m grateful for the spark you gifted my child with that day would be akin to calling Mozart “just a songwriter”.
So it’s official. We’re going to do this every year. We are going to CELEBRATE different. World Autism Awareness Day, though an important and serious occasion, is also a cause to celebrate. Because even in cases of severe, life-altering ASD, we are celebrating that WE ARE. That ASD families share a bond of hope and joy and pain and struggle and different-ness. As Temple Grandin says, my son is “Different… not less.”
I am going to celebrate that difference. I’m going to keep speaking out. I will continue to advocate. I will continue to try to empower my child, to teach him to love himself, to teach him that he IS enough, even while I work to help him succeed, in whatever form success will look like for his life. I am proud of him, and it is my distinct honor to be his mother, and his advocate. As long as I draw breath, I will rave about this boy who has so changed not just my life, but now the lives of others, just by being his own, amazing, different, autistic, authentic self.
And THAT is something to celebrate.