thoughtful, not scrubbed

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Said the following to a fellow autism Mama earlier today. Thought perhaps she might not be the only one who needed to hear it. “Stay strong, Mama. As positive as we want to be, it’s ok once in a while to say that it’s hard.” #Love

~ Diary’s Facebook Status, Sunday

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I talk a lot here about how important it is to think carefully about the words that we use. To ensure that we don’t demonize autism as to allow it to be built back up into the mythical, mystical, larger-than-life monster that we’ve worked so hard to prove it not to be, and at the same time that we don’t glorify it in such a way as to minimize the severe challenges that so many face.
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But – and this is a really important BUT – by saying that I think we should measure our words, I don’t mean to imply that we should ever take it so far as to scrub our stories clean for public consumption. And I sure as hell don’t mean to imply that we can’t stand up sometimes and say, “This is hard.” Because it is.
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Respect for autistic individuals and their right to celebrate their autism if they so choose is paramount, but it can not come at the expense of sanitizing our narratives to the point where they’re one-dimensional – and not remotely recognizable or believable because they’re no longer real.

This road is not easy. It’s just not. Watching your child struggle is hard; feeling powerless to make it better is abject torture.

Admitting that this brand of parenting is emotionally fraught – that as beautiful and rewarding and exhilarating as it can be that it can also be conversely but equally painful and messy and HARD does not make you a bad parent.

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Saying out loud that you’re hurting does not make you an enemy of the autism acceptance movement. It makes you human.
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Our children struggle in ways that no child ever should. At times I swear that if my girl could climb out of her own skin she would. No matter how much incredible progress she’s made, no matter how hard everyone in her world works to try to help smooth her path, she still has to fight mightily every God-damned day. She fights to communicate, to connect, to participate, to interact – sometimes just to BE. As hard as it is for her Mama to watch, it’s got to be a hell of a lot harder for her to live. And that kills me.
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To say that out loud does not make me a traitor.
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It makes me her mom.

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Ed note: I followed the suggestion that many of you made the other day to post ‘Walking Away‘ on Huff Po. The post is up (in politics, no less!) and I’d be most grateful if you’d click over, leave a comment and share the link. Thank you!! Click HERE.

35 thoughts on “thoughtful, not scrubbed

  1. It is hard!! and right now I’m so deeply depressed it’s not funny. I go to the psych sometime in the next couple of months. I have to fill out paperwork again and make an appt.
    my boys struggle so hard every day and it makes me sad and frustrated for them. They fight every day and it makes me angry for myself and for them. I wanted children so bad and I never thought it would be so hard for them, never. I wouldn’t give them up for anything in the world but I would change it if I could. I WOULD CHANGE IT IF I COULD!! Does that make me a terrible mommy for not accepting the future? I think I have excepted what life has thrown at us but I would still change it. So many people say they wouldn’t change their children but I would, am I horrible, Jess?

    • oh, honey .. of course not. when our kids hurt we want to take away what makes them hurt. wanting to take away the disabling parts of autism – to mitigate the challenges – is human. and please don’t wait a couple of months for help. when you start with ‘I’m so deeply depressed it’s not funny,’ it’s time to get help. not in a couple of months – now. we all need support; it’s not just ok to ask for it, it’s necessary. please take care of YOU.

      • I went today and filled out the paperwork and scheduled appts to see the dr and my therapist. I see my therapist on the 1st of May and the dr on the 21st. I got the first available appts. Thank you for all of your support!

      • oh, beth, i’m so glad. i’m sorry it has to be so damned hard, but you are DOING THE RIGHT THING. there is nothing harder yet nobler on this journey than knowing when to ask for help. hugs.

    • Beth: THANK YOU for saying “I would change it if i could.” I always feel guilty when I hear people say that they wouldn’t change anything. I love my son more than I can say, but I would take this burden away from him, if I could. I would change it if I could — it feels good to write it.

      • I am with you 100%. If I could change it I would! I have no guilt in saying that either. The way he has to struggle every damn day…hell yeah I would change that.

      • I think, absolutely, that people should feel free to express the way they are feeling. I’m not one of those people who would say, “I wouldn’t change anything,” and I actually don’t know anyone who has ever said that, autistic or otherwise (though I don’t doubt that you do know someone). I do think, however, that it’s so, very important to be specific with our words. “I would change it if I could,” leaves me wondering what “it” is. In my son’s experience, autism means a lot of difficult struggles, but it also means a lot of interesting and powerful gifts. So I wouldn’t change autism if I could, but I would change his sensory struggles and his social anxiety. I try to use specific language because I don’t want anyone (especially my son) to ever think that autism equals bad. I hope that makes sense and please don’t think I’m judging anyone’s experience. We all have to do what makes sense for us and our families.

  2. Always the hardest part for me. The fact that he has autism isn’t the hard part for me. It’s watching him struggle and hurt though things that should be simple. Things that we take for granted. That’s whats hard, the rest I can cope with

  3. It all comes down to honesty, doesn’t it? To put a pretty shiny coating on things does a disservice to every parent out there. Some days are beautiful, and some are so hard. But in sharing how we feel we can give others courage and strength, and the most important thing—the knowledge we are not alone through the good and bad. I cannot begin to express how deeply grateful I am for your blog. It never fails– you always write my story. Thanks, Jess.

    Much love, Stephanie

  4. Oh, mercy, it IS hard some days. And, yes, I always tell myself that, as hard as it is for me, it’s harder for Nik to go through his day in a world that is not designed to readily or easily accommodate his needs.

    The times when Nik and I are so connected that it makes my heart clench in my chest and brings a lump to my throat? THOSE are what I hold on to when I feel lost and foundering. And when that doesn’t work, I have my “village” of mamas (and some papas, too!) to turn to.

  5. thanks for saying that it’s ok to say or do something that we feel is right just because we are their mother!! (as long as it is not intentionally hurtful or disrespectful, ofcourse!) I think that’s all the reason we need sometimes… Well said!!

  6. Stephanie hit it right on. It’s about honesty. Parenting is hard in general. Special needs parenting is also hard. To say it’s anything but not will make those who are really struggling feel like there is something wrong with them as a person. It’s part of welcoming to the club. There will be days that are filled with joy and progress and smiles. There will be days filled with meltdowns and bruises and difficult choices. You put this so eloquently in your title. Together we need to think about how we talk, but to make sure others know they aren’t alone. Another home run post.

  7. Some days my fear and pain grips me. There’s nothing more painful than watching your child struggle every day. Every. Day.

  8. I love your honesty…it’s what draws me here. You have a way of spinning the honest truth..and it is often so similar to my truth. It is hard, it does make us worry, and it’s ok to say so. Terrific post!!

  9. Thank you for sharing so honestly as a parent, it makes training to become someone who can truly provide meaningful services to children like Brooke and families yours that much more real. When people ask me why I want to be a school psychologist I explain that it is because my family and I have had our own experiences with disability, and I feel there are just not enough people out there who understand the law and regulations but also have the compassion necessary to truly consider the whole child in an evaluation, and help to determine what services and circumstances that unique child will thrive under. I have been reading for a while now, but have yet to comment and just had to let you know that you and your community are an inspiration.

  10. I have the same “want to jump out of her own skin” child. Recognizing her unhappiness and sometimes mine doesn’t mean I minimize her potential as an autistic individual.

  11. “No matter how much incredible progress she’s made, no matter how hard everyone in her world works to try to help smooth her path, she still has to fight mightily every God-damned day. She fights to communicate, to connect, to participate, to interact – sometimes just to BE.”

    Yes. Sigh. It’s like spending the day scaling a mountain, clinging to any crevice that might be available, only to slide down to the bottom again at the end of the day. Every. Single. Day. Our kids are such hard workers it boggles the mind.

  12. Damn straight, Jess!

    My husband and I cannot seem to see eye-to-eye on this particular issue. When I get angry at autism, he sees it as me not accepting our son. And I get how the husband arrives at that assumption, but that doesn’t make it any less erroneous. One night after going through Cam’s exhaustive tuck-in routine, I was feeling the weight of it all. The thought ran through my mind, “How is he going to find a life-partner when caring for him is so much work?” I was feeling ashamed of this thought when I confessed it to the husband. I ended it with “I f-ing hate autism sometimes.” He got angry. And I told him what you closed with. I see Cam struggle every day, wanting simple things like a friend, a connection. I want an easier life for my son, I’m his mother and that’s my right. Wanting to take the angst out of his life doesn’t mean I’m being a bad parent. It means I am a parent.

    It’s such a fine line. So many of us on different sides of that line. Being all-inclusive while highlighting ‘your’ autism is crazy hard. For what it’s worth, you’re a rock star at it.

    • Oh that’s awesome!!! She sent me a note yesterday saying how much she liked you too!!! I knew there was no way you two wouldn’t hit it off. So glad it all worked out – and I LOVED the photos from Old Williamsburg – the horses in the evening light were gorgeous. Hope to see you soon! Woof!

    • Mr. Robison, I just wanted to tell you my 17 yr old with Asperger’s read your book “Look Me In the Eye” and it changed his outlook, on himself and the world. He feels more confidence in himself now after reading it. Thank you for sharing your story and making a difference in our house.

      And, Jess, thank you again for being,well…..you.

  13. it’s true – i try very hard to be strong & I know she is amazing, but some days are hard on my daughter or myself & sometimes I struggle to admit it without feeling like i’m being hard or negative on her. so I like the way you’ve worded this. thanks again. stop by my blog sometime to see how we’re doing! (I’m still very new, so would love some feedback from you or your followers)

  14. Thank you so much for writing this. It is so nice to hear another parent raise the topic of sanitizing our words. As parents we are the last people to ever want to make a comment about autism that may be takent the wrong way but we also do have different experiences of it and we should feel free to discuss those experiences openly.

  15. Pingback: “become all but autistic” | that cynking feeling

  16. Wow and wow! You made me weep. Just because those too are my words, thoughts, emotions, like so many others. Well done.

  17. It is hard. It’s hard watching him have another meltdown tha involves hitting himself over and over. It’s hard dealing with no sleep for 10 plus years. It’s hard watching typical children of the same age and knowing I will never have that.

    Then there is the time I pick him up from school and the hugs me and doesn’t let go. There is the silly ritual we do under the traffic lights and when we go over bridges. There is the smiles that light up a room and the innocence that will never be lost.

    I am a proud mom of two boys with autism.

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