Sometimes, you can’t help but overhear the conversations going on around you. There are words that seem to make them pop out in your mind. The name of my kid’s school. The name of a favorite restaurant. Autism. Yes, if I hear the word “autism” come up in conversation, I can’t help but listen. Your mind silently wonders, Are you a fellow special needs mama? Do you “get” this, too?
I was at the park with Jack one last time before the summer would give way to the routine and structure of Fall. Jack was engaged in one of his favorite park activities – swinging. His head was leaning back and he was cutting his eyes at the support poles of the swing set. Normally, I would try to break him of the visual stimming, but not today. Today was a day for Jack to be exactly who he is.
It was then that I caught a conversation from a group of moms at the periphery of the swing set. Being a special needs mom to a child who gets easily overwhelmed, I am used to being at the fringe of the typical social circle of preschool parents. In a way, I don’t mind occupying the space outside of this world of competition. I’m glad that I don’t have to be a player in those games of whose child is more advanced than another. It’s me and my boy – together – against the world.
The moms exchange the usual gossip back and forth. I then hear one pipe up about another mom, one who is obviously not there, as she explains that this absent mom is in the process of having her child tested for autism.
My head perks up; it seems involuntary these days at the mention of autism. It’s then that I hear the words that so many of us hear these days, both in media and among strangers – and, unfortunately, friends and family – who are, for lack of a better word, ignorant.
“You know, her son just doesn’t look autistic to me! It seems like autism is the new fad thing to have – like it’s cool to have a kid with autism.”
I was a bit taken aback by her assertion. It’s cool to have a kid with autism? I have to admit, my autistic child is cool; he’s the coolest person I know, but I’m admittedly a bit biased. However, no parent asks for this. No parent wants to have a child that struggles. No parent signs up to have a child who requires hours upon hours of therapy each week for him to simply progress and grow. I don’t think that any parent seeks that out for their child if they don’t truly need that therapy and if they don’t truly need help.
It’s not a “fad” to have a child with a disability. Accusing another parent of seeking a diagnosis because it’s the “cool” thing to do is not only harmful, it’s just cruel. It’s cruel to someone who is at a very difficult and fragile place in their life – a place in which there is a lot of fear and a lack of resolution. Parents facing an uncertain future for their child don’t deserve speculation and gossip. They deserve compassion and understanding.
And he doesn’t look autistic? Well, what the heck is “autistic” supposed to look like?
These truly are “invisible” disabilities. Our kids with autism, or SPD, or dyspraxia look just like everyone else. Cuter than everyone else, even. There isn’t a look about them that screams their diagnosis.
It reminds me that the advocacy never ends. Each of us has a responsibility to our children – to ourselves – to continue to educate people we encounter about our children’s conditions. We need to show people that their preconceived notions of disabilities are just that – notions. There is a reality to our children that is both more raw and more benign than what they might imagine.
We also need to advocate for the children and the families that will follow in our footsteps. For that absent mom who was the subject of gossip. For all of these families and children who have yet to receive any diagnosis, we need to educate others that these diagnoses are real. They do affect families and children. We need to educate others that not only is this something that profoundly affects our lives and the lives of our children, but there are also treatments and therapies that can help. We need to educate others that diagnosis is just the start of the journey.
And for the child who is having a meltdown in the store. For the mother who is the subject of stares and gossip. For the kids that wear headphones and compression vests, or who might flap their hands. We need to educate others that these children aren’t just acting “strangely”. They aren’t being bad children. We aren’t being bad parents. We need to educate others that there is a biological basis for why our children act as they do.
It may sound hypocritical, but in that moment I chose not to speak. The advocacy never ends, but that moment would. That moment where my angel is at peace with the motion of the swing and sight of the the steel out of the corner of his eye. I thought about speaking up, but I looked down at my baby. What would he want me to do? Would he want me to speak for him, or was he content in that moment?
I knew the answer. I continued to push him in that swing, knowing that the advocacy never ends. There would be more opportunities to educate someone – they never seem to stop coming.
I’ll never stop writing. I’ll never stop speaking. I’ll never stop telling people about my boy. My hope – my wish – is that the world will be a better place for it.