Sometimes, when I relay an anecdote here, it is in the vein of the surface humor and quirky innocence. When you look deeper, there is always the disability. Some of the stories, while light-hearted, still convey the underlying message that I speak from travels down an unconventional road.
Every choice I make: school, treatment, disclosure, diet, schedules, work or stay at home, types of play, hours my child sleeps, activities in which he participates – all affect who my son will become. There is a roller coaster I ride in connection with these decisions and it is full of emotional peaks and valleys. As much as I want it to slow down and let me off, it doesn’t and it won’t. I will ride it for the rest of my days.
When I started this blog, it was with the goal of spreading awareness to people who were facing a potential diagnosis. For moms who needed another voice to help them through the storm. So others might find someone who’d been through it without a clue and relate to that. Sometimes, I’ve shared stories that I had no idea would stir a controversy only to find myself in the middle of one. The one thing I never thought about was changing the world.
I have been fortunate enough to be educated by everyone that surrounds me. I have received acceptance and kindness, advice and rebuke, and genuine love and support from close friends and family far away. I honestly believe it all comes from caring and kindness.
I try to do what is in my child’s best interest. Will I hurt him less by taking one action over another? Shall I allow him to participate in unproven therapies that may reduce his difficulties, or do I try to make others accept him as is? There are no easy answers. There is no black and white. There are only shades of gray.
I have a strong desire to “normalize” my son, to reduce his oddities so he can blend. To teach him to “behave” as neurotypical children behave. I love my son just as he is. But I am not the concern. Controlling the things that make him different, the best he can will help him get by with the least amount of grief, now and forever. The odder he is, the more he will be made fun of. It’s as simple as that.
There are millions of people who will never come here and read (bummer). There are people who may tell you to your face that they understand, but who, behind your back, have other ideas about your parenting skills. Some have preconceived notions that autism is a lie or an excuse. There is a lot of ignorance. There is ugly and unkind.
Who, among us, does not know of this quote from the land of idiocy by Michael Savage, which was reprinted and captured on audio here: This is it:
“Now, you want me to tell you my opinion on autism, since I’m not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden — why was there an asthma epidemic amongst minority children? Because I’ll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], “When the nurse looks at you, you go [fake cough], ‘I don’t know, the dust got me.’ ” See, everyone had asthma from the minority community. That was number one.
Now, the illness du jour is autism. You know what autism is? I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is.
What do you mean they scream and they’re silent? They don’t have a father around to tell them, “Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.
Autism — everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, “Don’t behave like a fool.” The worst thing he said — “Don’t behave like a fool. Don’t be anybody’s dummy. Don’t sound like an idiot. Don’t act like a girl. Don’t cry.” That’s what I was raised with. That’s what you should raise your children with. Stop with the sensitivity training. You’re turning your son into a girl, and you’re turning your nation into a nation of losers and beaten men. That’s why we have the politicians we have.”
That’s someone you could never educate. And he is not an isolated individual. According to one survey, Savage attracts nearly 8 million listeners to his radio show daily.
The second famous idiot to speak about autism did not do it on a radio show where it could die out quickly. He did it in his book where his words will live in infamy. This idiot’s name is Denis Leary and here is what he said:
“There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don’t give a [bleep] what these crackerjack whack jobs tell you – yer kid is NOT autistic. He’s just stupid. Or lazy. Or both.”
Denis Leary was the “star” of the TV show, Rescue Me, for over 6 years with an average audience of over 2 million viewers. These are “famous” people with followings that spout such utter nonsense. And sadly, people listen and nod their heads in agreement.
The bitter reality is that there are millions who believe autism is a “fraud”. We don’t run across them in our world generally. We don’t talk about them. Those millions have kids. Those kids go to school. Those kids will meet my kid. I hope that my kid will be armed with tools to help him cope.
When my son is fully developed as a person, knows his mind, and can recognize dangers of the world around him, whether that is as an adult or before or after, he can make his own decisions. He can advocate for himself.
Until that day, I will do my best to see that he blends. To avoid hate. Is there a better way that is realistic for today’s world? Let me know. In the meantime, I will work to make him the best shade of gray I can. And maybe, if we figure out the way to a better world, his colors can flourish in peace.
[After posting this, my great bloggy friend Kelly was inspired to post her own “tribute” to Denis Leary at her blog… Please check out her very endorsed and different take on this subject here. ]