Uncategorized

I hope you’re wrong.

I was scrolling through my brain of what has brought me to where I am in my life now. I tried to find a way to string together the commonality between the biggest bouts of growth I’ve had as person.  I find myself today a different person than I was just a couple of years ago. There have been great changes that were of my causing and some were of not. The biggest change in me came from one thing:

Being wrong.

No one likes the feeling of being wrong, but I doubt there’s something that has such a power for change if we but embrace our wrongness. Just sit there for a while, being wrong.  Being right rarely challenges our worldview, it rarely requires us to think outside the box- or the compartments- we’ve built for ourselves. While there are many experiences that challenge us to grow and to be more, there are few things that require introspection like finding out we were wrong about something we were sure- we KNEW- we were right about.

After Casey was diagnosed with autism, I wanted answers. I wanted to know why he regressed, why he lost his words, imitation and love of all foods. I searched and found and answer that felt right: the vaccines. His regression was RIGHT after he was vaccinated, right? I mean, it was around that time. But it had to have caused it. Right? I stopped vaccinating him and delayed vaccinating Peyton until I was sure he didn’t show some of the early pre-regression signs Casey had.  Even then, against the science-based arguments of a doctor I now have a lot more respect for-I delayed his vaccines as long as I could stomach. I did not want to be wrong. I didn’t want to give Peyton autism, too.  I was wrong. But not about Peyton’s autism.  I was wrong about vaccines.

I had done what so many had done before me. I had wanted answers where there were none. When I came  across data that proved otherwise, I found myself doing what is well documented in controlled psychological experiments: I dug in. My belief only got stronger in the face of conflicting data. I built up walls inside my brain to continue to be right about something because ANY answer was better than none. It gave me control in an area I felt completely powerless. Eventually, I embraced my wrongness. I dragged all of my kids down to the doctor and go them all caught up on their vaccines and have vaccinated them on schedule ever since (minus the times the doctor’s couldn’t allow Abby to be vaccinated because of her health issues).

Since realizing I was wrong I’ve felt a need to steer people away from the very real dangers of not vaccinating their kids. I’ve fought hard against the prophetess of the movement- Jenny McCarthy. I seek to prove her in her wrongness so that other people aren’t led down that path.  Being SO wrong about something like this changed how I felt about vaccines, but not how I felt about being right. It didn’t shake me of my belief that my gut, my feelings about The Unanswerable Questions. I went on being right. I went on not challenging my preconceived notions about family, faith and who I am and what my place on this earth was to be. Until I was wrong again.

Into my adult life I believed that being gay was a choice. I remember when I read the science behind orientation and my beliefs were challenged. People are born gay. Instead of rethinking the whole issue, I went with what I was told: Sure, sure, they can be born gay, but they don’t have to be gay. They can be celibate.  They don’t need LOVE, companionship or even to be recognized as equal to heterosexuals. They still had a choice.  Ugh. It wasn’t until I had children who were born different that I saw the parallels. Though there is no disability in being gay beyond what society has imposed on it, my rightness was challenged in fighting for equal rights for my children. For fighting for inclusion.  I didn’t want people to leave my kids out because of the way they were born.  In that moment I knew I had a choice: Be a hypocrite, or be wrong.

I chose to speak out for equal rights. In so doing, my rightness was again challenged in regards to my faith. My testimony was challenged not by people outside the faith- but from people on the inside.  I was told that it was 100% true or 100% false. There was no grey area.  So I studied. I spent a year studying it all. I came out on the other side ripped from the whole framework of which I had built my life.  I had been wrong. It wasn’t what I had thought it to be. There is no pain-none- like that feeling. It was a death, a defeat, a divorce all wrapped in one.  Being wrong about something that so many times I had stood before a congregation and said that I knew, not even that I believed, but that I knew, felt like it split atoms within my soul. I broke into a million pieces and have put myself back together completely rearranged.

The pain of being wrong about this thing, and the ongoing pain of other’s believing that I am now wrong, has it’s fingers in every area of my life. But it’s opened me up to something remarkable:  though wrong hurts,  it opens our brains up to endless possibilities. It forces us out of the boxes we create for ourselves and allows us to become whatever we want to be. It gives us compassion and empathy but mostly, it gives us a reason to listen to the other side of the debate. Being wrong before has opened me up to the possibility that I am now wrong and will be wrong in the future.  Being wrong has freed me.  I see the universe in a brand new light. I see science as art and the Unknown Answers as having endless possibilities. My brain is free to roam into any idea, and then it is challenged to decide if it is right or if it is wrong.  I’m cautiously optimistic about being wrong in the future.

Many of you now are feeling that I am wrong in the views I have said. That’s fine.  I could be.

My hope for you this new year is that you will find yourself in your wrongness. That you will be challenged and that you will grow. That you will be set free.

I am free.

Graphic1

Uncategorized

The autism is hard.

The autism is hard.

His words. Not mine.

There, laying at the foot of the stairs, his head on his arm, his legs squirming as if trying to pull free from his body he again moaned, “The autism. The autism is hard. Why am I so much afraid all of the time?”

I have always been careful about what I say about autism when Casey is around. I knew he’d internalize they way we spoke of it, and I never wanted him to feel like his autism made him any less than his siblings or friends.  I wanted him to be proud of what it gives him, but, somewhere along the lines, I stopped the dialog with him about the hard parts. I stopped letting him feel how he needed to feel. I kept willing rose colored glasses on my beautiful boy who sometimes needs to see in black and white. And he needed me to see his world there with him.

I knelt beside him and watched as silent tears crawled down his face. “I know it’s hard. I’m so sorry, Casey. I’m so sorry it’s hard today.”  I scooped  him up the best I could and brought him over to the couch. He was not content to sit by me, but rather, crawl onto my lap.

autism is hard

 

It’s been a rough time for Casey. We can’t quite put our finger on why. The weather change? Hormones? Me? Is it me? I’m so worried that he’s picking up on my own moods, my own stress, my own sadness. Waves of guilt rush through me and seep into my tired bones. Even when I try my best, I can’t help but blame myself.  Casey doesn’t blame me though, not yet. I look at some of the adults with autism I know that hate their parents. That hate all parents. Will he become like them? Will he hate me one day for messing up time and time again even though I was desperately trying to  help him?

We decided to try to adjust the world to Casey. To find safe places for him to just be him. We started out simply- a “sensory-friendly movie” at our local theater. They turn down the sound and keep the house lights on. When we got there, I delighted in having Casey in a place where people weren’t going to look at him funny for his autistic behaviors. An environment set up for him to be himself, and to enjoy something ‘normal’ like going to a movie.  He was VERY excited. Check out his rocking:

And I sat back and enjoyed it, too. He could rock the hell away and it didn’t matter. The people who surrounded us were there for the same reason. We had won this round with autism, I felt. We had set ourselves up for a win.

Autism is an elusive beast. Just when I think I have a hold of Casey’s autism, I’m grasping at air as it has once again changed shape. It can be large and loud and terrifying. It can be repetitive and obsessive and completely, soul-draining obnoxious. It can be beautiful and responsive and a borderline super-power.  It can be crushingly sad. The danger lies in never knowing which form it’s going to show up in, how long it’s going to take hold, and how tightly it will affix itself around Casey.

I was prepared for autism at that sensory-friendly movie. We had all of the provisions. And then, again, autism showed us it could outmaneuver us, even as seasoned experts.  Fear made it impossible for Casey to stay in the theater. Not knowing what was going to happen next. Sadness blanketed us both as we sat under that exit sign, defeated by this strange beast we have worked so hard to try to love.

IMG_9149

 

To discount the realities of any disability is to rob it of its beautiful complexity; it lessens the triumphs and it denies all involved of the authenticity found in expressing every emotion.  It’s the lesson I’m terrible at learning- to let Casey lead. If he wants to be pissed at the shitty hand he’s been dealt, well, I’ll be pissed with him. If he wants to rock with joy, I’ll rock with him. If he wants to cry, I’ll share in those tears.

Because the autism is hard.

Uncategorized

I’m sure of nothing.

I hit a million. A million times this blog has been opened up. People read. People cared what I had to say.  A benchmark more than a goal- I never thought anyone would read this stuff, but one that I looked at myself and thought, “Whelp, maybe I’ll walk away.”

Blogging. This damn blog has changed everything for me. Everything. Okay, correction: it’s helped me to find people who have helped me to see everything differently. To THINK. It’s taught me to challenge what I supposed to be true- and it turned my world upside-down and SHOOK IT really hard. All of the contents came tumbling out. Who I was, my goals, my view of disability, my religion, EVERYTHING.

It’s been a wild ride, and so many of you have been here before the car even pulled up to the starting line. I remember a friend telling me that to be considered a “real” blogger, you have to get at least 25,000 hits a month. I remember the first month I hit that. I thought things would change for me.  I thought when I had “made it” people would appear to give me cash for ads, jobs for real websites for real money, etc. I still live with the very real delusion that money buys happiness… I digress. But what I’ve gotten out of this blog is better than money. Mostly. Backing up, I remember the first time someone ‘shared’ something I wrote on Facebook. It was my cousin Tyson, and it was my post about the pranks my friends and I had been pulling on each other. That high of getting a couple of hundred hits was like any other high- exhilarating. I wanted more.
So I wrote more. I longed to connect to people like me. Until 2011, I had only really known a couple of Down syndrome bloggers that I had met through Babycenter. Gail, who has been here from the start, prodded me to look up Diary of  A Mom. One day I did. From there, I found Sunday at Adventures in Extreme Parenthood- where I found the Special Needs Ryan Gosling Meme. I laughed and laughed and laughed. I found what I can now only describe as my tribe; my family. Parents who were going through what I was and had found themselves walking the fine line of sanity. We got through by making each other laugh, and really, crying with each other. It was this group of parents that has carried me through the toughest years of my entire life. It was this group that walked me through being angry at autism to accepting it (mostly). It was this group that stood by me, even when they disagreed, when I was getting hammered by negative comments from trolls, and worse, people I really cared about.  It’s this group that I think about when I begin to be okay with walking away from my blog.

This blog has cost me more money than I’ve ever made on it. My get-rich blogging scheme? Yeah. You have to be motivated to make money doing this. I just want to write. That’s all.  What I’ve gained from this blog is more than what I’ve paid, times a million. I’ve changed so much. I will readily admit that. I think I’m better now. Stronger. Wiser. More honest.

The honesty continues to get me in trouble. Having more people actually read my stuff lends itself to having more people there to criticize me. More people who put down how I’m feeling and even what I’m going through. People who comment, people who send me messages, people who even go so far as to trash me on their own blogs (I KNOW, RIGHT? Seriously, get a hobby, assholes).  Maybe I sound like a big fat baby, but at the end of the day, it SUCKS to put yourself so completely out there- I say things here that I’d have a really tough time saying out loud- and be trashed for it. There are people who come here ONLY to find things to be pissed at me for.

These last couple of months have wrecked me. I toy with shutting this down all together. It’s not just the dickheads. It’s me. I’ve been pissed that some stuff gets shared while others do not. I’m mad when something that took me ten minutes and is a warm fuzzy is loved, and something that I pour my heart and soul into gets glossed over. I’ve become this egomaniac with my blog- I was checking my stats several times a day and I almost stopped writing the truth- the real truth without a glossy spin on it- because those are the times where the negative feedback would be the worst, along with my stats.

It’s so dumb. And I honestly don’t know where to go from here. I want to be myself- but the minute I swear, the minute I say something that doesn’t bode well with one of the various communities I am in or WAS in, I get raked over the coals for it. I’m not as strong against that stuff as I want to be. It still messes with me for too long. It still makes me long to do away with this blog because I feel like I’ve gotten enough out of it. It makes me want to be done.

When I started this blog, I started out sure I had all of the answers. I knew all of the answers to life’s questions, and never even dreamed of questioning anything. Now? I’m gladly sure of nothing. I have become well acquainted with how little I truly “know” and I’m fine with that.  I have my days where I want to rage-quit this blog. Burn it down. I have days where I’m sure I want to keep doing this forever. I have days like today where I’m just content to not know.

Because in the end, being sure of nothing means there’s room to grow. Maybe I’ll continue. I’m paid up on the server for a couple more months. Maybe I won’t. I know right now, I’m taking off comments and I’m getting rid of the “like” button. I don’t need to judge myself by what other people like. If this blog was for the ads or for some other purpose than to just tell our story with my insane spin on it, then maybe. But it isn’t. This blog is mine. This blog is me.

If you’re here to tear me apart, don’t let the door hit you on the way out. If you’re here to clutch your pearls and judge me when I swear, or tell a story that crosses the line:  LET THE DOOR HIT YOU ON THE WAY OUT. I’m done working around the words I want to say. I’m done biting my tongue. If I go on, it’s going to be without you. If you want me to go back to being a fluffy mommy- blogger,  well:

IMG_8045

 

 

Uncategorized

Promise me.

I felt the earth tilt a little a my resolve crumbled around me.  Dizzy. Nauseous. Mad.

Most of all, sad. I had spent days preparing for this meeting. Knew the law well, knew I had rights. It all laid poached like once hopeful animals at my feet. I had nothing left to say. No fight. They won.

And it isn’t me that lost. It’s my daughter. My beautiful, three year old completely non-verbal daughter. Abby doesn’t even babble. Yet here they were cutting the time she would have in a language rich environment in more than half. Cutting speech services. Why? Because they could. Because the law let them. Because at the end of the day, they’ve met their bottom line and my daughter isn’t worth anything extra than the bare minimum. Their dollars are better spent on a child that excels than a child with Down syndrome and autism.

At least, that’s how it felt. That’s how it hurt.  I couldn’t hold back. My advocate skin had been too thin, the parent-the mother- was all that was left. I was reduced to a quivering lip that betrayed me. I broke down. I sobbed. And then I did something that I truly regret:

I apologized for the tears they caused.

I apologized for tears that showed the damage they had inflicted- like apologizing for the blood that spills from a bullet wound. I apologized.

I won’t ever do that again. I’m done apologizing for feeling hurt when people hurt me. I’m done holding back tears for the safety of my car or home. I’m done pretending everything is all right when everything is not. all. right.  My life is beyond hard. I can put any spin you’d like on that. I could finish this post with some resolve and some “everything happens for a reason” bullshit, but I won’t because it’s not honest. It’s not me. It’s not real to what I’m going through.

I could not publish this because I know damn well that the district reads my blog now. But I am going to publish this for the same reason I cried in front of them and for the same reason I will never  apologize for tears again:  TEARS ARE HONEST.

No more. No more crying in our cars after someone says horrible things to us in a grocery store. No more apologizing to the person who caused our tears. No more feeling like we are weak for loving our children so much that our emotions take over.  It’s in these times, in the times that we have the courage to break down, the courage to show how deeply we’ve been hurt, how deeply we care, it’s these times where we are our most brave.

Promise me, too, that you’ll stop holding back and apologizing for tears that were not your fault. Promise me that you’ll let people feel the full weight of their actions as they flow in tears down your face. Promise?

Promise me

Uncategorized

Autism Speaks does not speak for my son.

Autism Speaks is calling for a “national plan” in a piece written by Suzanne Wright on the organization’s home page. I’ve been disillusioned with Autism Speaks for some time now, mostly because they spent so much time and money peddling their wish for a cure.  The “cure” narrative bothers me. It treats my son’s neurology as a disease, not the way he was born. I’m all for any advances that will help him function better in his daily life- it’s why we have given him speech and occupational therapy since he was 14 months old. It’s why we get him extra help during the school day so that he can accomplish his goals. But we do things his way. We seek to understand him and let him work through academics using his unique and wonderful neurology. A cure seeks to change who he is- and we LOVE who he is.

In her article, Mrs. Wright went much further than the whole cure issue. She dehumanized my child and my friends who have autism. She begins the article talking about what the nation would do if we woke in the morning to find that 3 million of our nation’s children went missing. How we’d all freak the hell out and look for them. Then she said that’s exactly what is going on for our children. They’re missing. And we’re not doing anything about it.

Ahem? My son is not missing.

She goes on to talk about how hard the lives are of families with children with autism by saying, “These families are not living. They are existing. ” We’re zombies? Sure, there are days where I don’t get sleep and I feel like a zombie, but that doesn’t mean my life is devoid of beauty, joy, laughter and LIFE.  We aren’t existing. We are living a life less ordinary. Hard? Sure. But we get to experience a range of emotions that I would not trade for anything. I’ve felt sorrow beyond any I’ve known and in contrast, I’ve felt joy that I will never be writer enough to put into words. I’m REALLY living.

Autism Speaks Does Not Speak For Me Or My Son

She goes on, “This is autism. Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.”

At this point, I’m really struggling to not use bad words. This picture she paints is NOT AT ALL autism. How dare she? It’s not a life full of despair and fear.You’d think she’d know a thing or two about autism by being the co-founder of Autism Speaks.  This takes me to the other reason I’ve become disillusioned with Autism Speaks: They speak for people with autism rather than letting autistic people speak for themselves. The infantize autism in almost everything they do. The whole piece was about children. About how hard it is having a child with autism, how costly, and how we’re not ready for a future of 3 million autistic people who can’t care for themselves (which completely discounts the fact that a great many people with autism are completely self sufficient.)   The piece says nothing of how it feels to be a person with autism in a world that is not accepting. In a nation where the co-founder of Autism Speaks itself writes something so completely awful about people with autism.

At the end of her article, she talks about the message we’re sending to our kids. If I could ask Mrs. Wright anything it would be this, “What message do you think my son would read in your words? How would it make him feel as an autistic individual? What message are you sending to children with autism?”

The whole article was about how autism is ruining lives, tearing families apart and costing the nation too much money. It talks about everything having to do with autism besides the autistic person themselves. It does not seek for understanding and acceptance of people with autism and it does not say a damn thing about helping adults on the spectrum.   Autism Speaks presumes to know what everyone with autism needs, and in this piece she paints every autistic person as being one that will never function in society, is missing, and is causing their families great sorrow and pain.

It’s just not true. Beyond that, it’s hurtful. She does not speak for me as a mother of a child with autism and the organization itself absolutely does not speak for my son.