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Thick skinned.

I wish I could just walk away without saying anything. I wish I could say that I didn’t even care to read the posts or the comments. I wish I could say it didn’t matter to me that people called me the worst things anyone could call a mother. I wish.

I was honest. I wrote a post that resonated with a lot of special needs parents, and then chose that post to do for Listen to Your Mother. I chose it over anything funny or uplifting as I truly believed, and still believe, that it was one of the most honest things I’ve ever written. It wasn’t easy to write, and it definitely wasn’t easy to give. I’m not a natural public speaker. When the videos came out, I watched it and cringed and cringed and cringed. I was embarrassed to post it. I only saw fault in the video.

What came next was the most amazing bunch of comments, shares and emails from people who had seen the video. I sat and cried as I read. I felt uplifted, little did I know how much I would need that in the days ahead. While most parents said that they have felt what I felt, there were a few that took me to task. Some where thoughtful in their disagreements, which is fine. I’m open to that kind of conversation. Some, without knowing me, without ever reading my blog, took me to task. Among other things, they said they felt sorry for my kids because they ended up with a mother like me.

I want to tell you that it didn’t hurt. I want to come across as being this picture of perfect strength. But that’s just not me. I’ve been waging a war against depression as it’s slowly crept into my bones.  I’ve been taken off one medicine and put on another, and it’s screwing me up something fierce. Other circumstances in my life have taken whatever thickness I had accumulated to my skin and rubbed me raw.  So when these posts came through (I get ‘pinged’ on my blog any time someone adds my web address to their own) I had only the cushion of the wonderful comments I had received to soften the blow of such harsh words.  I wish one golden comment outweighed one horrible one. I wish that I remembered all of the good and shrugged off the bad. I’m working on that. One day I’ll be able to, right?

I wanted to go to these blogs and posts and write harsh rebukes about how they didn’t know me. I wanted to show them my blog and tell them how wrong they were. But they wouldn’t have come to see. They want to believe I’m terrible. They want to be “horrified” with me. They want to attack, and have done so repeatedly for the past year or so since I got on their radar. It’s sad to me. These are members of the disability community. Instead of fighting for rights, for educational changes, or for things that actually matter, they just attack each other then bitch about how nothing ever changes.  They repeatedly question my advocacy, my mothering and the kind of human I am without knowing me or how hard I work to affect change.

And it hurts. It makes me want to quit fighting. I can’t fight for rights along side them if I’m fighting WITH them.

In the end, this blog isn’t for them. It’s not for my kids either. It’s for me. It’s for the other parents who feel the way I do and have told me that I have helped them to not feel as alone. Your comments here and on my page have kept me going when I wanted to throw in the hat. You’ve kept me writing, and I’m supremely grateful.

40 thoughts on “Thick skinned.

  1. I am a parent of a newly diagnosed son with ASD. You have helped me so very much in these difficult weeks. An honest, uncensored, and obviously kind and caring soul who is able to say, so eloquently, what I and many others grapple with on a daily basis. I can’t advise you to dismiss or shrug off comments, but I hope that you won’t be deterred from writing.

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  2. So hard for me to understand how anyone could not see how amazing, brave, smart and loving you are. When you read it the first time around the table, I remember feeling so dumb for never putting myself in the shoes of other parents, for complaining about things that in perspective are so minimal. I think you were honest and raw and put yourself out there in a way most people will never be brave enough to. I feel like a better person for having met you and being able to read your blog and learn from you.

    Sending hugs and love!

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  3. Hugs for you. I love your honesty, your poignancy, and everything in between. I am sorry that you’ve been attacked for being you. As long as you keep writing, I’ll be reading.

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  4. Anyone who says that they never felt the way you did is either lying to us or to themselves. We love you, and appreciate you putting yourself out there.

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  5. We love you, Lexi. Know your friends. Screw the others. Easier said than done, but hey… what happened the other day wasn’t right at all. big hugs to you, doll. I’ll text you funny stuff later. PROMISE!

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  6. I am sorry you feel this way, I love your blog! I know sometimes it is so hard to stand proud, when there is a lot of criticism, I have been there! But the truth is that YOU CAN! This is about you, who you are and how you feel…whoever disagrees leave and please close the door! I wish you peace of mind and money!

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  7. After being thrown into the ASD world a year ago, finding voices like yours out in the world has made all the difference. Thank you for putting the real stuff out there. It can’t be easy but you need to know you are making a difference for all of us that follow after you. My heartfelt thanks to you.

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  8. Other peoples judgement defines who they are as people, not whom in which they are judging. Their issues are there’s alone, don’t own their negativity and point of view, its not yours.
    You are fabulous just the way you are! I have 6 children, 4 with special needs, and you know what everyone has dark days. I love your blog, i don’t feel so alone in the challenges, your sense of humour cracks me up, and you bring happy to some of those dark days.

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  9. I’m the mom to 3 children. Two of my children are on the spectrum and the third is Bipolar. I’ve never known any other world but my own. I’ve been jealous of other moms. Every word you spoke made me cry because I knew I wasn’t alone. Don’t stop being you…

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  10. I beg you to keep writing the honest truth. You can’t imagine the effect it’s had on me to read the thoughts I’ve had come out of someone else. I’m not alone, and you’ve helped me know and feel that. Thank you for being you, and opening up your life to us. You rock.

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  11. If they’re hating on you, that means you’re doing something RIGHT. They’re threatened by you. I’m convinced that parents who verbally attack/harshly judge other parents do so because they’re unhappy and insecure in their own choices. Still, I know how painful negative responses can be, and how they infuriatingly outweigh the positive somehow.

    Your family is lucky to have you. Anyone who says otherwise is full of it and a sad, little troll.

    You’re making the internet trolls unhappy. Don’t stop! (Take a break of course if you need one, but don’t fall silent because they wrote lies.)

    If they get to type whatever is on their minds, then so should you. Be louder than them – we’re all here with you.

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  12. I wish wish wish wish wish I could “like” all the comments here!! They are all exactly right. And everything you say is exactly right. It’s right for you. If others’ have problems with what you write and do, it is exactly that. Their problem. YOU are the most wonderful person, doing an amazing job that only YOU can do. I know it’s hard not to be hurt by the haters. But it really is all about them and not about you. Keep doing what you need to do for you and your family. LOVE YOU!!!

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  13. Awesome1; don’t let them bring you down. Will love free, if you will.

    Here’s an awesome love story. The first part is not for people like you.

    Read the bottom part; people like you are who that part is for. But first and foremost my wife, ‘the Queen’, if you will…

    🙂

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  14. You don’t know how much your voice, your spirit and your sense of humour has done for me. I am so glad to know you. I know that insults hurt more than compliments can heal. But you are LOVED. Don’t forget. You are so loved.

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  15. Wouldn’t it be great if every parent wanted what was best for their child? Not to go by society standards or what every one thought was the best for them behind an internet name? Raising a child with special needs is hard. Raising any child is hard. Anyone who says they know better or are better is just trying to make themselves feel like they are in control— the school yard bully. I’ve come across enough teachers/therapists/doctors who have all told me I was doing it wrong— go by the book. Listen because they know better. Well, no one knows my child better than I and I stopped listening a long time ago. There are great teachers/therapists/doctors out there but they don’t know my kid like me. And they don’t know me like me. Do your best and be honest. Parents have enough struggle with their guilt and if they are doing the right thing. They don’t need outside shit to bring them down. Keep on keeping on.

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  16. Oh I think everyone feels at least a little thin skinned when they put themselves out there in such a raw and real way.

    Try to keep in mind when someone is on the attack that it isn’t about you and who you are it is about them and who they are. This applies to any situation. The reason people react the way they do has everything to do with them and really nothing to do with you.

    It kind of takes the pressure off when you hold this in your mind because instead of taking up an offense or feeling badly about yourself, you tend to wonder what in the world happened that caused them to be so miserable, bitter, hateful etc and to feel the need to express all that towards another person.

    XOXO You’re one of my favorites!

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  17. Where do I begin…I’ve been following you since the beginning of this year & I’ve been on FB since Dec 2012. Obviously a lot of people who read your blog have never met you in person. But even with that said, you are surrounded by countless supporters who understand your frustration with both the special needs & neuro-typical communities alike. Of course the biggest difference between you & these supporters is that you lay out your life for all to see.

    I have three Autistic children. I may be able to identify with your heartaches & “jealousy” with those parents who haven’t had the same struggles & “seem” to take their life for granted. But that is where the similarities end. Just like no two autistic or downs syndrome children are the same so are no two parental experiences whether NT or SN. I can only empathize with you & your struggles. I cannot “know” how you feel even through your beautiful, eloquent & powerful prose.

    I have always been one to remember every misstep & negative moment in my life. I have a very, very hard time accepting compliments. My children have given me a great gift. The gift of perspective. They are a bit too young to feel true disappointment or discouragement. However, I do. This makes me take a step back & ask myself…”why do I care what others think? Is life a competition? Do we win a contest or game show by reading the same book and using the same cookie cutter pattern to raise our family.

    You are one of those “true” heroes. That pave the way for the rest of us. (Keep doing what you are doing). Do not give any more of your mental & physical being to those who want nothing more than to poach your audience (even if briefly). Although, it may give a sense of power to those who would tear down others, true power comes from finding the love within & the love for each other (this is a direct quote from my husband). People can hide behind their online personas with very little risk to themselves. For (Yes), we are rallying behind you to lift you up but you have to reclaim your blog. Your “power” is to move on with a greater purpose. For in the end, the only one we will have to answer to will be “Him” & we were “all” made in “His” image.

    The last thought I want to leave with you is this. At the very least because you are an amazing woman, wife, mother & gifted writer you were able to “motivate” the lowliest of the low of our population to get off their “asses” (oh no, they would have been sitting most likely on a chair @ a computer) & write you back. Albeit, they were “snarky”, unkind, distasteful (& the list goes on and on) comments but they were words none the less. The passion & honesty that you convey on your blog speaks volumes about your character & how you’ve affected others. I’ve just written a treatise on the subject & you were my inspiration.

    Sending you & your whole family a “virtual” high five, fist bump & a very, very big hug. You are a gift…(well played)…next chapter.

    Kindest thoughts,

    Felicia Cunningham (CA)

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  18. Lexi, I watched your video when it was first posted on fb (via Lizbeth) and I LOVED it. You said exactly what I have thought many times over the years. In fact, I shared it so that my friends (without special needs kids) could gain some understanding of what it is like for us. There are always going to be trolls.. don’t waste your time and energy on them. Rock on, Lexi. Keep it real. xx

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  19. I struggle with that stuff too. My pastor reminded me that people speak out of the overflow of their hearts. I believe it. The words that come out of our mouths are coming from all of those things that back up in our hearts and beg to get out. When jerks are being unkind to you, you just remember that they’ve got a heart problem… a backlog of junk that only THEY can work out.
    You’re speaking out of the overflow of YOUR own heart… and it’s beautifully honest. Authenticity is rare but so remarkable and that’s what I find when I read the things you post. Hang in there. You have a beautiful heart.

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  20. I love your writing and your blog has helped me enormously. Thank you for taking risks by saying in public the things many of us have felt in private.

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  21. I loved your video. Cried through the whole thing. My son has spina bifida and I think it’s important that we’re honest about those feelings of jealousy. It doesn’t hurt our children to have those feelings– being honest and talking about it for our own emotional health is so important. Bravo you.

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  22. I’ve been kind of MIA on the internet for several reasons but mostly because I can only take the annonawebs in short bursts. You know I deal with major depression and anxiety as well. It rules my life more than I care to admit. Words have hurt me more than any physical abuse every has. Sometimes it’s really hard to see the good in so much bad. All you can do is cope. Surround yourself in a pillow or a bubble of awesome and fiercely protect it. Protect your happiness Lexi. Take the ping notifications off. Out of site..out of mind. You got this girl. Keep fighting the good fight. You are worth it. You are the best mom those children could ever have.

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  23. Lexi, I love you. And my writing advisor in college used to tell me something like this:
    The opposite of love is not hate. You will have to open yourself up as a writer to people’s opinions of you and your work, and it’s just as okay for them to hate your work — hate you — as it is for them to love it. What you don’t want is someone to be indifferent to you or your work. If they’re indifferent, you’ve failed to make them think or feel. If they hate you, it’s because you’ve made them feel something that isn’t comfortable. Which means you’ve succeeded, as a writer, in doing what you should always set out to do: To touch people with your work.
    It’s so much harder when they choose to judge you as a human being, but that’s where they’re going because that’s the part that challenges them the most. Your humanity. Which is vast, and for some people, too bright for them to see clearly.

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  24. You are right. It is for you, and for those that choose to follow you. I know that I don’t want to follow things that upset me, and I so wish that others would choose that direction rather than attacking what they don’t agree with. But alas… when you put yourself out there with something controversial, you are bound to have others not agree. Of course it hurts to be attacked. I don’t know how to really build up skin thick enough that it wouldn’t. But you are right that they don’t know you. I am impressed, though. (Heck, I even made my husband watch your video!) Hugs to you.

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  25. I can’t tell you how many posts you have written that have been exactly what my heart needed to say and couldn’t. I appreciate how real you are. You are raw, honest, hilarious, and endearing all at the same time. Keep on writing your truths Lexi, no matter how those people choose to judge you. So many of us look forward to reading your truths every single day. I know I do.

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  26. I have disagreed with some of what you have written (not that particular post, that one was honest and perfectly said). When I disagree, I do not comment. I hope you are able to get on that one perfect med (I relate) and that you feel better soon, Mrs. Sweatpants.

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    1. Disagreement is ALWAYS welcome. There is a huge difference about disagreeing in a way that starts a conversation, and disagreeing in a way that is just downright cruel. I love you, and I love when people call me on my crap. If people hadn’t, I wouldn’t be where I am in terms of autism acceptance as I am. I’m always learning, and I need people to help me.

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  27. I can only add my voice in support of what everyone ^^^ has already said. In the absence of knowledge or information, too many people make up information in their heads to fill the gaps. They begin to judge and condemn the very things they have decided must be true. Hold fast to your personal truth, Lexi. Hold fast to the truth that you are an incredible human being with a huge heart, a gift with words and a DAMN GOOD MOTHER.

    We are only promised a life in this world, There is no promise of good or bad, simply day to day. Your truth resonates with so many. Let THAT carry you through. Let that be your bubble if necessary. Keep writing.

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  28. You say, “They want to believe I’m terrible. They want to be “horrified” with me.” In reality, deep inside, many of them are saying, “I wish I could be honest like her. I wish I was willing to accept that life is hard for EVERYONE at some time or another. I wish I could pretend I am not perfect and that everything is roses and sunshine every single day. I wish I didn’t have to live in a Pinterest perfect world! I could never survive what she’s surviving.” Seriously, I bet half of those people cry in their closets on days when their kids have a basic meltdown.

    And yes, people could make different choices. Life could be easier for you if you had made different choices. But you made the choices you made and you are doing your best to survive through the challenges that came with making those choices. Who cares what anyone else decides. Who cares what fake faces they produce and what sad criticism they share to make themselves feel better.

    This is real. Hard core. Life. Raw. Thanks for keeping it that way.

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  29. I just found your blog today. While I don’t have a child with autism or downs, you give me perspective, which is important for me to be a better parent, a better teacher, a better person. Your writing and sharing are amazing and does so much to help so many people. You are brave with your honesty and your messages are so important. Please stay strong, (it took me a year of trying nearly every antianxiety med out there before I found the right one and the right dose…so stay strong on that journey as well). I look forward to learning more from you!

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