Autistics Speaking Day - Autism Mom Speaking

Today is Autistics Speaking Day. While I’m not Autistic, my son is. Because he has Autism and because he’s only 4, today I am his voice. Most days I am his voice, though sometimes that frustrates him, because he wants to speak for himself. Sometimes it’s OK with him, because he’s starting to understand that most people can’t understand him, and that I’m his interpreter.

The first thing that I would like to say for Jaden is that, if people would take the time to slow down and listen to him, they might hear him without my help. He has a lot to say, but it doesn’t come out easy for him. He works harder at talking than most people do at listening.  I’ve seen him follow people, repeating a sentence so as to make sure he articulated in a way that might be understood – really working at it – only to have those people not notice his efforts. I know the reasons are because 1. He’s a child. 2. He’s a child that’s hard to understand (those combined seem to trigger some automatic shutoff switch in adults.) 3. Adults aren’t used to children being so desperate to talk to adults. 4. He doesn’t usually look right at you when he talks and his attention seems to be elsewhere, so it’s easy to dismiss him. 5. His body movements are erratic when he’s excited, which he usually is when trying to talk to someone.

I’m saddened, angry, heartbroken and literally sick for Jaden when I see him work to get someone’s attention in vain. He tries so hard. Jaden is speaking but no one’s listening. I worry what that will do to him and his self-esteem through the years. Mommy’s love and attention will not always be enough. 

So on his behalf, I ask everyone to pay more attention to who might be trying to say something to you. Not just Jaden, but anyone that might communicate in unorthodox ways. Even neurotypical children can have very untypical ways of trying to communicate something. It takes maturity to be articulate. A kick and a scream might be code for “I feel really wrong right now, and I have no idea how to handle it. HELP me!”

Now, I want to speak for myself as a parent to an Autistic child.

As some of you know, it’s been about a year and two months since we realized that Jaden wasn’t developing normally. It’s been only 3 months – has it only been 3 months? Hasn’t been forever? – since he was diagnosed with Autism.

During that year, I was forced to see something that I only saw in the peripheral (the corner of my mind’s eye, so to speak); that children and adults with disabilities are invisible little ghosts that not many people think about or want to think about unless that person has a family member with Special Needs. What pains me is my own memories of being in school during recess and glancing over at the Special Ed wing, briefly curious about the children there whom I never saw. The children that some of my classmates would mimic in mocking manners to each other. The children who had different schedules and lunch breaks and busses than we did, even in my tiny school. I can’t tell you anything about them because I never saw them. Even the windows were tinted too dark to see inside.

And I can say that this is all just as well. Because I knew my classmates, and how heartlessly they harassed anyone who was different from them. I know because I was different. How much worse it would have been for a child with developmental disabilities.

So these things I’ve thought about, and grieved over, in the past year.

But nothing had prepared me for the real horror of it, and of Autism.

After the diagnosis the grief and the pain had to go somewhere, needed some outlet. I’m a mother to a child who needs a lot of attention. I didn’t have the luxury of a nervous breakdown, I didn’t have the time to lay in bed for a month crying over it.

Instead I spent most of my nights until the break of dawn online researching and writing.

One night I came across a comment on a board that mentioned “those 3x4 boxes they used to have in Sumner County schools.”

What? Was I misunderstanding, because it sounded like these boxes were for CHIDLREN. Surely not. So implausible that I dismissed it as urban legend. Until another little comment somewhere prompted a search.

My heart is breaking right now so I will just say that you know the conclusion of what ended up being months of research. If you haven’t read my articles about it you can see them here.

But that’s not all. Because from the beginning of my time online with “Autism” in the Google search box, a lot of the off comments made were by the parents themselves. Don’t get me wrong. All of the parents I’ve actually met and most I’ve heard from online are amazing people who adore their children. But many of the voices that are heard are parents who like to tell about how “… but this is child I was given, so now I have to deal with it.” “No one knows how hard it is, how awful it is, to raise a child with Autism.” They would often launch into detail of the awful thing they call life with a child with Autism.

I’m probably going to make a few enemies with this statement. But I wish those munchausen moms would shut the hell up. These are our children, and unfortunately to a portion of the world that doesn’t know any better, they’re representing me. And representing those amazing parents who adore their children. Pity-mongering is like sex with a stranger, it may feel good for the moment but in the morning no one respects you. Ultimately they’re working at odds with themselves because pity will not gain their children respect as a person. Quite the opposite.

So let me break it down as my own Autism Mom Speaking Day. Don’t pity me because I have an amazing child. I wouldn’t trade him and his beautiful mind for anything in the universe. If God could take me back and ask me what I wanted, it would be him a million times over (plus infinity, but I’d ask Him to stop asking me before we got to that point.)

What we have here is a serious problem in this country. I won’t digress (yet) into a full-on rant about social norms, because God and my husband knows I sure can. But they do and always have caused evil and destruction. It’s the mob mentality in full-fledged life-long form. It is. Think about it for a while.

Right now our social norms dictate, among many other evil things, that we should get all up in arms if a dog is thrown out of a car or half-starved, and the owners would go to jail. But if a child with Special Needs is locked in a cell or restrained until they’re broken, or if a gang of 3 young men physically torture a teen with Autism for hours, or a fat teacher sits on and kills a child with disabilities, or if a child is withheld food on an ongoing basis as a form of “behavior modification,” or if an aid sits on a child with Autism while he’s being confined in a straightjacket until he stops breathing then goes about his day like nothing happened, they don’t even get a night in jail. Sadly, I could go on and on and on.

These children are worth less than our animals. Please read that. If these things were done to an ANIMAL, those people would be in jail.

There’s a major disconnect and it must stop now, and it must stop with us.

My child is a person. He comes complete with a soul. An amazing, beautiful, sunshine-filled soul. So do all the other children of those amazing parents who adore their children. When we get them all together for playdates, there are some very marked differences in what you would see at playdates for neurotypical children. But it’s not what you’d think. Not at all. They play, laugh, go crazy, get shy, have melt-downs, as many “typical” children do. The difference is that there’s no teasing, no bullying, no exclusion. No whispering behind backs or sarcastic hurtful comments. No one cares what anyone is wearing. Many of them have a fascinating, literally wide-eyed innocence that most people lose by the time they’re 18 months. They delight in simple things, little praises, little accomplishments, with enthusiasm. Their emotions come through unfiltered. There’s no guile, no understanding of manipulation or social games. They just are, and take everyone else as they are.

What I ask for, on Jaden’s behalf, is that you do the same. See them for who they are. See them. Don’t let them be invisible anymore.