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War On All Sides.

When I wrote, “I Am An Autism Mom,” I alluded to some things going on within the autism community.  I wrote that I am an a parent of a child with autism. I don’t have autism. I’m doing the best that I can. What I didn’t write was what led up to that. What’s been going on in the background. I have been attacked on all sides of the autism community. There just is no winning.

If I say: I want my son to have every advantage in life and am getting him therapy to help him reach his goals, I get: “Therapy is abusive. It’s harming the child in the name of treatment” from some autistic adults.

If I say: I like Casey just the way he is. I don’t want to cure his autism, I get: “If you don’t cure your son’s autism, you’re a negligent mother. ” By the likes of John Best Junior and Jenny McCarthy.

If I say: Jenny McCarthy doesn’t speak for me, I get: “You don’t know what you’re talking about. You’re ignorant. You poisoned your child with vaccines!” etc.

If I say ANYTHING about my son’s autism, I’m told that I’m infantizing autism- even though I speak about my son- who IS a child. I’m not speaking for my child. I’m talking my experience of having two kids with disabilities. I write about how I feel about it. And guess what? Sometimes it’s really hard. Somethings it sucks.  By saying that, I don’t mean that I hate my child and that I hate autistic adults, as is correlated over and over and over again. It just means that having my son scream for three hours and not be able to get through to him is HARD. This is MY truth. I’m not using my voice to talk over theirs. This is not a competition.

In the past month I’ve been called a bigot, an idiot, abusive, hateful, among other things. For what I’ve said here. For what you read here on this blog. Parents are being vilified for doing ANYTHING.  We are made the enemy because we talk about autism, because we have a larger platform. I’m not sure how that’s our faults. They get mad when we write about our experiences as parents of autistic children TO parents of autistic children.

I feel like ANY time I write about autism, I have a big target on my back. I can’t win no matter what I say. I can’t win no matter what I do.

But, all of this is just online. I look at my son. I look at the light in his eyes as he knocks me over with a hug. I laugh at the things he says and marvel at  his intelligence.  He is kind. He is polite. He cares deeply. He loves hard.  I might not get it all right, and there’s a very good chance he’s amazing in spite of me, but at least I know I’m not doing it all wrong. He’s happy. His life is full of joy.

I will continue to write about my experiences. My truth. I will continue to be vilified. Oh well. I know that at the end of the day, my son is happy. And that’s all that matters.

I wish you could see better the joy in his face.
I wish you could see better the joy in his face.

44 thoughts on “War On All Sides.

  1. God, this EXACTLY how I feel, too. I’ve become afraid to say anything on my blog, not because I think what I’m saying is even remotely controversial, but because I know that there are people out there just waiting to fucking pounce, simply because of who I am and not even because of anything specific that I’ve actually said.

    However, a very smart friend of mine (and yours), who is both autistic and an autism parent, reminded me the other day that this is actually a very small “war,” made up of very few people. The majority of people out there who are involved in the autism community don’t really have any idea what we’re talking about when we refer to this specific situation, and she asked me how it serves the community at large to let ourselves become so caught up in this very small cat fight. The answer, of course, is that it doesn’t. Our jobs here, as bloggers, are to share our stories; our hardships, our struggles, our triumphs, with the hope that we can help other people. And that’s all we can do, is continue to speak from our hearts, and try to ignore the people who will pounce on us for no reason other than they don’t like who we are. Let them call me names, because they don’t know me; let them say what they want about me, because I know who I am and I know that they’re wrong.

    1. Yes to all Jillsmo said. IRL I don’t discuss this stuff with anyone. Most of the parents I know have no idea about these ‘wars’. I don’t tell them as a way to protect from the unnecessary hurt that occurs on line.
      I know I can walk away from my computer hug my kids, love my friends and family and not give angry people a second thought.
      Your’e an awesome mum, woman, blogger. x

      1. True. That’s why I don’t engage them unless I absolutely have to. Because it’s just not worth the heartache. I’m just sick of being afraid that what I post is going to piss someone off. But oh well, you can’t win them all.

    2. Our friend is right. It just sucks when the voices of this small catfight become SO loud that they drown out the rational, quiet voices. I don’t understand how people expect us to learn from them when they are calling us names. Their message gets corrupted in their anger.

  2. Go Lexi! is all I have to say. You nailed it in one here. I know exactly what you’re talking about and it’s true – you can’t win either way. But keep writing to and for us autism parents because we love what you write, we love who you are and we know that nothing in your life matters more than your husband and kids.
    Fi x

  3. First off: you are awesome. Second–fuck them and their small minded eejitry. I can talk easily because i have somehow flown beneath the radar on all this shizz–but i mean this wholeheartedly–WHAT THEY THINK NEVER MATTERS. I don’t care if those who shall not be named called me the worst mother on the planet and vilified me on every website they could find. I don’t respect them, so i don’t care. Lot less stress that way. In the end, they are small, petty people with nothing but an axe to grind, and they don’t know you from Adam. Fuck ’em.

  4. Thank you for writing this! What you wrote is exactly how I feel–when I blog/talk about my son, I’m talking about MY experiences, which are just important as anyone else’s. As you said, I am not trying to speak for my child, I am trying to speak for ME, to get what needs to come out, out. Thank you again!

  5. you know what? you get to tell your story.

    there’s not a side to take. you’re doing your best with what you know for your one kid. not for everybody, not for a cause.

    for your kid and your family.

    you go.

  6. the silly thing is most blogs ive read and most parents ive spoken to abiut their experiences of raising autistic children are all feeling the same thing! are you saying the same thing! it seems ridiculous to belitle emotions that the majority of us, a massive majority of us are feeling?

  7. Keep writing, keep telling your family’s story. It’s a shame it takes courage to do that, to know you will face criticism regardless of what you write, but in the end, you’re absolutely right–you’ve got happy kids, you’re a loving mother, and compared to that, the criticism of strangers is absolutely nothing at all.

    1. Thank you. My kids ARE happy. And that’s the lesson that I’m learning. That everything else can go to hell. As long as my kids are as happy as they can be in whatever sphere they’re in, I’m good.

  8. I’m so sorry thats happening to you. I don’t have a child with autism so I would never speculate what it is like or judge you for your choices. Part of blogging is just giving voice to YOUR OWN experiences, I don’t see why any one wants to come here and vilify you for that? Although….I have gotten a nasty comment or two about how I choose to speak on certain topics. But, That is what the delete button is for 🙂

    Keep on speaking your heart.

    1. Thank you. There are people out there that are going to disagree with everything I say, no matter what the subject, I think. I’m no stranger to it. And I will keep speaking what’s in my heart or what’s in my crazy, crazy brain.

  9. There isn’t a mean bone in your body. I know you have been catching it from all sides, and I’m sorry. I think there has become a stereotype of autism parents, and now it is popular to claim everyone fits it. You don’t. You are one of the most open-minded people I know and a kind soul. Keep writing your truth, friends.

  10. Oh, I can see the joy on his face. I know that joy. I’m so weary of people criticizing others who are doing their level best with whatever they have on their plate. I appreciate what you write; it makes me feel not so alone.

    1. Thank you. That’s the most ironic thing about the people criticizing. They aren’t offering solutions for the most part, and those that are are trying to sell you some overpriced snake oil.

  11. Lexi, be safe in the knowledge that you do so much good with your blog. Those that see only negative are living that way all the time and looking to make others around them just as miserable. No one knows whats right for your son and your family better than you and your husband.
    And if all that deep and meaningful stuff I just said was too much luvin then you also have the option to tell these mongrels to bite your beautiful bad ass!!! (Please note I’m just guessing its beautiful I haven’t been looking promise!!)

  12. Lexi,
    I just wrote somewhere that you are my new best friend and you don’t even know me, have never seen me but you speak my thoughts. I was in a very very down place when I found you, you words are still today helping me get through this downhill time in my life. Like I said I don’t know you, you don’t know me but I sure do feel like you ARE one special person. I don’t know where these people are that are saying mean things to you but I’m not sure they really have special needs children, if they did how in the world could they find any fault in what you write. Maybe they have nannies or maybe they can pay for someone to do all of the STUFF (meaning hours on the phone, cleaning up the stuff thrown all over the room after a meltdown or rage whatever your preference to call it is, just the worrying alone takes the whole day)
    Wait….. I really do not think they have it like you, me and every other person here that loves you for helping us speak so well what we want to say, but just cant do it as well as you.

  13. From what Jill said, I like this friend. She speaks the truth. It is not worth the time or energy to deal with people you don’t even know. At the end of the day what matters most is those you surround yourself with–their happiness and well being. Nothing more and nothing less.

    Heart you.

  14. Lexi, continue to stay strong and to shine that bright light of yours! And remember, that for all those who are negative and judgmental, there are MANY more who are WITH you and love you and your sweet family!!! You are an amazing woman and I applaud your willingness to share with us your experiences. Thank you!

  15. Well, you can count me as an ally. We’re all trying to do the best we can for our kids and that changes depending on the kid. And dear god is it hard when my son has a day like yesterday when an entire week’s worth of stress culminates in an entire day spent acting out. And trying to decipher how much is spawned by stress and are actions that he can’t control and which are him being a typical 4-year-old and testing limits? No matter what you do you end up second-guessing yourself. You want to be understanding of your child and his limits, but he also has to live in our society and can’t go through life being a spoiled, self-entitled, egotistical little maniac either.

  16. You and Jill have a very wise friend. A wise friend indeed. At the end of the day, what matters is who we are surrounded with and the impact we have on their lives. No more no less. Let those who you don’t even know fade away. They don’t deserve the space in your life.

  17. Brilliantly written! It really applies to all forms of social media. I’ve seen many mothers “attacked” for enquiring about a treatment or vaccine in a SUPPORT GROUP on Facebook. It’s quite sad. The very people who are supposed to support you are tearing you down. I call them Forum Fighters, like the people who used to look for a reason to hit the CAPS LOCK button and wear out their ! key in the chat forums.
    At the end of the day, it’s your child whose opinion matters most. 🙂 Keep enjoying those smiles, words and hugs. And keep blogging. There are more people getting support from your blog than getting offended or whatever gets their knickers in a twist.

  18. Not here to criticize you Lexi. A lot of times I read your blog posts out loud to my dh. It’s THERAPEUTIC for us to know that even though we are isolated, we are not the only ones who live this life. Most of the time when I write on my blog it’s for ME. It’s a way for me to vent, I can’t speak for you, but it’s helpful to read other peoples stuff. I was writing about someone who left an ANONYMOUS comment the other day regarding autism and what sucky parents we all are…and it was so HELPFUL for me to write that post. Who cares if anyone reads it or what they think? I totally know it’s hurtful, not saying it’s not, but this is YOUR place, and you’re a great writer. Really. TOTALLY true stuff. Not mostly this time.

  19. I don’t know what the issue is with the people who say these horrific things to you. You are expressing your truth. Bless you and keep up the good work, Lexi.

  20. Thank you for writing this post, I’ve been feeling the same frustrations for ages, and it only seems to be getting worse. I feel like I need a safe place to just talk and think and not walk around with a target on my back in the autism community just because I gave birth to an autistic kid. All the autism mums I know – every single one I’ve ever met – love their child with the sort of passion that outshines all this Internet-based horror. The stereotype autism parent that keeps getting attacked is some rare creature I am yet to encounter in real life, the autism mums I know are amazing women. You’re clearly one of them too. Great post. xxx

  21. It’s interesting how many people here have the same experience. I thought I was the only one getting skewered!! I’m glad so many people are offering support here. You can add me to your list of supporters! WE ARE THE RATIONAL MIDDLE, AUTISM PARENTS! There are apparently more of us here than it appears on the first scanning of the internet!

  22. Very good post. I keep saying this….. *Never judge another parent for the road they choose for their child. It is not your journey!*. So tired of the fact that there are people out there who are always quick to jump in and cause angst.

  23. Hey! So I just wanted to let you know that I am an “autism sister” and I get it. It’s hard. No two autistic people are the same, and different things work for every person with autism, and their families. I love your honesty and willingness to admit that it is so so hard, and that sometimes it just sucks. People will always judge, but until they have walked a mile in your shoes they do not have the right to say anything, so just ignore them 🙂

  24. I read this last night and nodded my head. Keep telling YOUR story and YOUR truth. I’m sorry you have been attacked for sharing your thoughts and feelings. As a newer reader, and an autism mom, I have enjoyed reading you and I hope you continue to share your words.

  25. I’m not sure I can add anything new to what everyone else has said above. I enjoy reading your blog (thanks to jillsmo for posting a link to it!). The attackers…static in the wind. Too bad there isn’t a form of static guard for blogs. 😉

  26. That sucks so much it makes my heart ache. Why can’t the world just be OK with the fact that we are all different people. With different children. And different families. Why so much judgment all the time. I love hearing your perspective, Lexi. I think you are brave and I admire your honesty and willingness to talk about things that are so hard. Even if I may not relate all the time, and even if my choices might be different. (And I’m not an autism mom either… so I know I’m probably on the outside.) Sometimes I feel frustrated even by the Ds community: that there are so many opinions and ways; but I feel like even so, I still see a lot of respect. I am saddened that you deal with this, but I’m proud that you continue on.

  27. Even though you have made some choices I am pretty I sure I will not, there is nothing on here that has ever said to me “She hates that child”. Never,
    I never comment here. But today you brought me out of the quiet. Really, don’t give all the naysayers too much credit. Just like trolls in the adoption communities? yeah, that.

  28. And, what you say also applies to families who deal with other “needs” that aren’t specifically “special needs”. We have our own battles in our family and there is no IEP or anything else tangible to classify them. They are what they are and they also take a toll emotionally and time-wise, and in figuring out how to deal, and on and on. Different yet the same. You speak for so many of us “in the middle” who are rational, thinking, fair people who want to do our best and do right by our kids and families. Anyone that tries to make you out as something else is flat out wrong. And they offend the vast majority of parents just trying to do our best. It must be hard to be those people. It’s much easier just to be supportive of everyone in their decisions (well, unless they’re downright abusive, but you know what I mean). And to keep marching forward. Love you!

  29. Thank you for this post! You are so right. The only thing that matters is that our kids are happy. I appreciate you writing about your experiences even though some people give you grief. Your posts are helpful to many of us who are looking for logical, sane, parents out here who just want to help our kids! Thank you.

  30. I haven’t read all the comments, but I’m sure based on your article that they were all supportive. Ok, I HOPE they were all supportive…

    My 14 year old daughter is Autistic. Diagnosed at 2 1/2. She’s an extraordinary teenager who I swear is part Vulcan; she cannot lie. So no matter what comes out of her mouth, whether it be uncouth or hurtful or judgmental or so sweet you could cry, it’s real. I absolutely could not imagine a non-Autistic Allie. Autism is as much a part of her as her blue eyes or her drive-by hugs.

    Unless you have walked the path with a special needs child, you can’t understand. And unless you’ve walked YOUR path with YOUR child(ren), then you have no right to judge.

    You go on an be your kids’ Mom just they way you want. Only you (well, and Dad) know what’s right for them and take people’s criticism with a grain of salt…and a lime and some tequila!

    Cindy

  31. Only a Special Needs Mother who’s been in your place and lives with a child that has
    autism can possibly begin to understand you,like myself I’m a Single Mom,the father of my kids left us as soon as he knew that his son was special,but you know? I love that boy with all my heart,and I WILL DO ANYTHING FOR HIM, I WILL DEFEND HIM ALWAYS,and WILL NEVER care what other people think of him,he is my EVERYTHING and I WILL ALWAYS LOVE HIM NO MATTER WHAT,also I admire you for having to endure twice the frustation about other people ignorance.

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