“While I do love my son, I wish we hadn’t had him…. Autism is not a life, it is an existence that hurts everyone involved. I had a retirement to look forward to, now I have a child to take care of until I die and then the government will have him. How is that good for ANYONE.”

The above comment was left on my blog recently and has made my heart hurt so much.

Autism IS a life. We live it everyday. There are many challenges  but LIFE is challenging in general. In fact, my life was pretty bleeping challenging way before my firstborn arrived and was diagnosed with autism. Alcoholism; OCD; Panic Attack Disorder; Agoraphobia; you could say I was pretty damn consumed with these challenges.

It was my children who brought clarity and purpose into my life, no matter what that purpose has looked like.

That above statement: “Autism is not a life, it is an existence that hurts everyone involved.” That’s bullshit. To say that we are merely existing is so far from the truth. We live and laugh and cry and learn and celebrate and crumble and pick ourselves back up again and just when we need it the most, an amazing and unique milestone is met or a new discovery is made (this week it’s my eyelashes, which would be fine if they weren’t attached to my eyes) and we feel more ALIVE than most people I know.

I don’t know this parent from Bob, but I feel incredibly sad for his son. How can you fully love someone if a part of you always wishes they didn’t exist?

I’m also getting pretty sick and tired of people blaming autism for everything. It makes a neat little scapegoat though, so everyone from doctors to teachers to parents to family and friends whip out those fingers and point. Aren’t you guys getting cramps from all that pointing?
It’s not autism’s fault kids get denied the supports they need.

It’s not autism’s fault children like my son are restrained, mistreated, and abused.

It’s not autism’s fault people use the r-word.

It’s not autism’s fault children are forced to spend an entire school day in soiled pull ups until they develop sores.

It’s not autism’s fault students are kept in seclusion rooms, locked for hours at a time, alone and helpless.

It’s not autism’s fault neighbors stare at your child like he’s growing a tail.

It’s not autism’s fault there aren’t nearly enough employment opportunities or transition programs for adults on the spectrum.

It’s not autism’s fault that in the year 2014, segregation is alive and well on public school campuses across the country, with so many of our special needs children kept in back buildings, far away from the general education population because, got forbid, the “normal” kids catch it (By the way, it’s also not autism’s fault that some people believe it’s contagious).

It’s not autism’s fault perfect strangers look at my son and believe he’s not worth the trouble.

Autism may be to blame for many things: Sleepless nights, financial woes, unique challenges which require unique and respectful interventions. I’m not saying it’s a walk in the park and that I bought a cake the day Andrew was diagnosed. But when it comes to so many of the hurdles our families face each day, let’s place the blame squarely where it belongs: On ignorance, prejudice, and a nation that has so much more work to do in order to provide support, services and continued legislation aimed at protecting our loved ones on the spectrum.

And the next time my son is ignored, disrespected, or failed by the system, I’m not going to blame autism.

My finger will be pointed directly at the source

which is most certainly not my autistic child.

Because it’s not autism’s fault, that other people suck.

{ 28 comments }

It’s Autism Awareness Month again, and since Andrew was diagnosed with autism in March of 2004, this year we mark our 10th Anniversary of being very aware of autism.

I could write another post – as I have done in the past -about the various manifestations of autism in our everyday life and the unique blessings and challenges we face as parents raising an autistic child, in an effort to bring about more awareness, more acceptance,and less ignorance towards the autism community.

But, I don’t really want to do that.

Instead, I want to talk to you about all the ways that autism has made me aware of so many things about our world I had never considered before we were graced with Andrew in our lives. There are plenty of blogs and websites and speeches and events scheduled for this month that will dedicate their efforts towards the more clinical aspect of autism, but few will likely focus on the fact that autism awareness is a two-way street. It’s not just about being aware of autism. It’s also about how autism has opened the eyes and hearts of millions of people who might otherwise never experience the very best and very worst of what our world has to offer.

Autism has made me aware every single ocean wave is as important, beautiful, and unique as the one that preceded it.

Autism has made me aware you can operate on a level of exhaustion you never thought possible.

Autism has made me aware less is more when it comes to friends. The good ones, the ones who get it and eat sushi in a van with you and your van-obsessed kiddo;, the ones who buy and grate pounds of white cheese for your cheese aficionado; the ones who won’t get offended when you decline the hundredth invitation because the idea of leaving the house feels insurmountable; those are the ones you keep around. Those are the ones you treasure. There is no time or energy to waste on anyone who isn’t willing to be part of the adventure. Tell them to take a hike already.

Autism has made me aware there’s no such thing as an autism expert. To assert that someone is an expert would be to assume that there’s only one true way of experiencing autism, and that’s just not true. This goes for individuals with autism, parents of autistic children, autism professionals, and so on.  Instead, there are individuals with varying degrees of experience in the many different aspects of this incredibly diverse spectrum, so it’s wise to seek out more than a single source if you want to know more about autism. I do not, on any given day as I parent Andrew, assume to know what it’s like for my fellow autism moms and dads to parent their children. I do not, on any given day, expect anyone diagnosed with autism to claim to know exactly what it’s like to be Andrew. Conversations which allude to this kind of “expertise,” are conversations I’m just not interested in. I believe there are a multitude of common denominators existing within our community, but there are even more variables in our individual lives that impact how those denominators manifest themselves. So the key word here is respect. Clinging to the belief that my way is the only way  would be detrimental to not just my personal growth as a parent, but the overall growth of my autistic child, as well as my ability to advocate for the rights of ALL autistic individuals.

Autism  has made me aware the special needs kids I used to ride the bus with when I was in grade school and Jr. High, deserve an apology from me. I’m so sorry that I ignored you all those years, that I never bothered to get to know you, that I laughed at the cruel jokes that centered around your existence in this world. I think about you often. I think about your parents and I wonder where you are and what kind of supports you have in place to make your lives better and more comfortable. I hope you are respected and valued by those around you. I hope you are every bit as unique and wonderful as you were back then, when I was too ignorant to appreciate you for the incredible human beings you are. I pray for your safety, and I pray that you are given every accommodation and opportunity that is rightfully yours. I see you in my child and I hope when I do right by him, that in some small way, I do right by you as well.

Autism has made me aware that the same stretchy, glowing, piece of crap fidget toy can cost 99 cents or 99 dollars, depending where you buy it from. Don’t let fancy prefixes such as “adaptive” or “autism-friendly” fool you. A glow stick is a glow stick, no matter what someone claims it can do for your child. I’ll tell you what it can do. It can glow. The end.

Autism has made me aware behavior IS language. Crying; biting; scratching; headbanging; self-mutilation; these are an expression of thoughts and feelings that need to be addressed. Too often we hyper-focus on the symptoms (“How can I get my child to stop biting himself?”) rather than the cause of those symptoms. “That’s just his autism,” is something I don’t ever care to hear, ever again.  Andrew is a thinking, feeling, living boy who relies on behavior to communicate when he has no other means to express himself. There is no attempt to “talk” to us that is too small to overlook. It ALL matters. Please. Pay attention to your children, young and old. If you see a change in behavior, especially a drastic one, please, oh please, do not chalk it up to “autism.” Chalk it up to being human and having something very, very important to say, and then work like hell to figure out a way to understand the language.

Autism has made me aware I can respect and even adore people I disagree with. My Facebook feed is filled with colliding beliefs and opposing viewpoints. As long as they’re presented in a respectful way, I’m okay with it. And truthfully, I, and every single person I know in the autism community that I’m social with -whether in real life or virtually – have one thing in common, and it’s the very most important thing: We love someone with autism, and we want to leave them with a better world to live in. That’s plenty to go on, in my opinion.

Autism has made me aware the R-word is on the tips of the tongues of way too many people. Guys. We’re done, okay? It’s over. Get a new word.

Autism has made me aware the world is even more dangerous than I ever thought possible, and that sometimes, the very worst things can happen in the places you thought were most safe.

Autism has made me aware kids aren’t born prejudiced. That’s something they’re taught. Kids are born curious, and it’s okay for them to ask questions. Shutting them down, telling them to look away; that’s just handing them bricks to build walls that are hard to tear down later. It’s better not to build them in the first place. I’ve always been a fan of the open floor plan myself.

Autism has made me aware everyone deserves a friend.

Autism has made me aware that while siblings often make the best advocates, they also have their own needs, and deserve those needs to be met with as much passion and dedication as is reserved for their special needs brothers and sisters.

Autism has made me aware parents of children without special needs are at the forefront of our children’s futures. You see, they’re raising the kids who will grow up to be adults alongside our children, which means what they’re saying about and doing for our sons and daughters today, matters greatly in what will be said about and done for them tomorrow. I know a mom who is not raising any special needs children. But you know what? She went ahead and started a Challenger baseball league in my neighborhood anyway. And her kids? Her kids need to be cloned because they’re gonna stand alongside my Andrew someday and fight for his rights and treat him with the dignity and respect he deserves. How do I know that? Because they’re doing it already. It may start with a game of baseball, but I see the light come on in the eyes of these peers who take the time on a Saturday morning to buddy up with our special needs children. You can see their wheels spinning, their heartbeats quickening as they realize a little effort goes a long way in the lives of our kids. A seed is planted, walls are torn down, the unknown becomes commonplace, and suddenly, the future looks a whole lot brighter.

Autism has made me aware I would kill for coffee. Not for money or power or prestige. Just straight caffeine. You, me and a cup of coffee? You’re going down and I’m heading to the next therapy appointment with an extra pep in my step.

Autism has made me aware it’s okay to burn bridges if it means forging new and better paths in their place, ones more accessible and leading to many different possibilities, instead of a bunch of dead ends.

Autism has made me aware there’s no shortage of assholes.

Autism has made me aware the day I stop believing I can do something about those assholes, is the day I fail my son. And that’s just not an option.

See? So much awareness going on here. And I didn’t even have a chance to get into how aware I am of bounce house blowers, multicolored smoke bombs, the tractor tipping scene from the Cars movie, the grave importance of never running out of freshly grated, fridge cold mozzarella cheese or sparklers, and that “WOOHOOO!!!!” can have approximately 3,567 different meanings, depending on context.

Most importantly though, is that ten years ago, I was made aware my son had autism.

There hasn’t been a day that’s gone by since, that I haven’t been aware what a precious gift he is to me, our family, and the world.

And that kind of awareness I can get behind.

Ian (left) follows his brother Andrew's lead in exploring the world through his eyes (and hands). Photo by Trevor Niemann Photography

{ 11 comments }

I’m Not Scared of Autism. I’m Scared that YOU Are.

The CDC just announced the latest autism statistics this morning. 1:68 children are diagnosed with autism. To understand the numbers, you have to understand the many variables at play. First, the data was collected in 2010 using a survey of children residing in 11 states. The previous number, 1:88, was based on a 2008 survey. [...]

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Behold: The Evil iPad at Work!

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Why Banning Devices for Kids is a Stupid Idea

So I just finished reading an article on Huffington Post entitled “10 Reasons Why Handheld Devices Should be Banned for Children Under the Age of 12,” and thanks to author Cris Rowan’s compelling arguments, I’ve removed all of the devices from the Ashline household in the hopes that it’s not too late for my precious [...]

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What Did You Think I Would Do? Stay Quiet?

You hear about it, over and over again, until it’s no longer shocking. Just incredibly sad. You imagine what you would do if it happened to your kid. But you never actually believe that it would, because, how could it? You’re vigilant, involved, dedicated, educated, aware. You volunteer, you show up to meetings with cookies [...]

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Me.

I’m writing a book. I’ve been writing it since 2009 actually. You may be thinking to yourself, “That seems like an awfully long time to be writing a book, Jo,” and you would be right, so let me clarify. What I mean by “I’ve been writing a book,” is “I’ve been sitting on my couch [...]

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Today, fear wins.

I’m supposed to be getting ready. I’m meeting a fellow autism mom at 1. Instead, I’m sitting at my kitchen table, my heart aching as I try to process the news about Avonte Oquendo. Remains which were found near the school where he vanished on October 4th, 2013 were confirmed to be his by the [...]

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Alcoholism: I Still Sniff My Water Bottles

There’s a lot of things that changed when I got sober. I stopped waking up hungover. I stopped eating whole cloves of garlic to mask the booze on my breath before my husband got home from work. I stopped ignoring my kids. I stopped feeling hopeless and helpless and like the only thing I was [...]

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New Girl and Netflix Make for a Happy Thanksgiving

A few months ago my husband approached me and uttered six words that gave me instant chills: “Let’s get rid of our cable.” As someone who loves her tv I was mortified at the thought. I may have inserted some choice four-letter expletives as a response to his insane suggestion. That’s when he broke down [...]

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