of bagels, amorous bunnies and the evolution of diary


{image is a photo of a winding path. What lies ahead around the bend is not yet visible.}

On Sunday afternoon, I wrote a post on Diary’s Facebook page that I would later take down. It read:

We just walked into Starbuck’s. Brooke walked up to the counter and said, “May I please I would like a plain bagel of plain and a chocolate chunk brownie please.” The barista took in the eleven year old girl in front of him with her oddly phrased and strangely delivered request, then looked at me and asked, “Would she like the bagel toasted?” I smiled as warmly as I possibly could and said, “Honey, the man has a question for you.” She turned her body toward him and waited. After an awkward silence, he asked me again, “Would she like the bagel toasted?” Smile still plastered on my face, I said, “I don’t know. I’m not the one eating it. Could you ask HER please?”

I don’t know how long I can keep smiling as I try to explain that my daughter’s autism doesn’t give anyone the right to speak around her as if she doesn’t exist. She’s not lost. She’s not a shell of a person. She’s a human being standing in front of you doing one hell of a job expressing herself in a language that doesn’t come naturally to her. If she is unable to communicate, I will jump in to help, I promise. But please, please, please don’t erase her. She deserves better. We all do.

Some readers responded with compassion, others with respectful criticism of my perspective. Some very gently pointed out that perhaps I was oversensitive and that autism, or even Brooke, had nothing to do with the barista’s reaction — that we live in a society where parents are very often expected to speak for their children. Some said it, well, not so gently. Either way, I took to heart the sentiment and accept the possibility that perhaps the scenario had not a whit to do with autism. Certainly plausible, but, to be honest, not a lot less uncomfortable for me either way. My daughter is not a toddler, she’s an eleven year-old, fully formed human being and I would hope that, autism or not, she would not be treated as if she were not there. (Some folks said that she wasn’t treated “as if she weren’t there” at all, but I’m not sure how else to interpret someone responding to her order by asking someone else a question about her in the third person without acknowledging her in any way, but we can get back to that.)

Some folks told me respectfully, and some not so respectfully, that my behavior was uncalled for, disrespectful and rude. I trust that they had missed my follow-up comments in which I explained that I had smiled at the barista, thanked him (and his colleagues) and tipped them. It was only after leaving the store that I came to Diary to recount the interaction in hopes of creating a teachable moment for all of us.

Some said that I was jumping on “this poor guy who only trying to do his job.” (Please see “smiled, thanked, and tipped” as well as the fact that I deleted comment after comment demonizing him or calling him names because no, just no.)

Many folks talked about the need for efficiency that they presumed drove his actions. I assume they missed the multiple comments in which I made it abundantly clear that there was not a soul on line behind us. Not one. We tend to go to places like Starbuck’s at off times when the crowd is nonexistent or, at the very least, light because, well, autism. I’d add that I can think of no less efficient method of ascertaining information about how someone who just ordered their food would like it prepared than asking someone who is not that person. (See: Does she want it toasted? –> Brooke, do you want it toasted? –> No, thank you. –> No, thank you. vs. Would you like that toasted? –> No, thank you.)

Some folks said that I clearly have no idea how hard it is to work in the service industry. As I told them in response, I tended bar and waited tables for the better part of ten years, much of that time spent in a family restaurant. If you must know, it was a TGIFriday on Long Island, so trust me, I get it. I spent years dodging toddler-tossed pickles, all with a smile and a, “Oh, aren’t you cute.”  I’m still in sales. I still have to smile and nod and accommodate customers day in and day out. I promise, I get it.

Many commenters attributed the barista’s response to the fact that he probably perceived Brooke as shy and therefore was being respectful. While I would have appreciated that had there been any evidence at all to indicate that she was shy – literally, any, that simply wasn’t the case. She had marched into the store, marched up to the counter and, loudly and clearly placed her order, then stood and waited.

Some folks asserted that while her order seemed clear to me, it might not have been to others. Since his question wasn’t “What does she want?” but was instead, “Would she like the bagel toasted?” I’m not sure that I understand the argument. I’d also add, as I did in the comments, that the young woman manning the cooler immediately started bagging both the brownie and the bagel, so the idea that Brooke wasn’t clear just doesn’t hold water.

Many, many people said that the barista was clearly just being respectful by “checking with the parent” to make sure that the order was okay with me. I would be far more inclined to see it from that perspective had a) she been four or five or even six rather than eleven, b) had I not been standing three inches from her when she ordered, c) had I not smiled at him the whole time, or d) had he asked about the brownie or even said, well, just about anything other than, “Would she like that toasted?”

A couple of readers asserted their opinion that I embarrassed my daughter by redirecting the barista’s question to her. I won’t discount that possibility. I hope not, but I’d be disingenuous not to acknowledge that parents unwittingly embarrass their kids every day. I will say, however, that one of my most vivid memories of my childhood was a great-aunt whom I adored, but who had a penchant for asking my parents, right in front of me, if “Jessie’s hungry,” or if “she might want something to eat,” and my parent’s consistent response, “I don’t know, Aunt Dora, why don’t you ask her.” My memory of those moments in my aunt’s kitchen were and are that my parent’s response spoke volumes to me about their respect for me as an individual, their confidence in my ability to speak for myself, their belief in my capability to know my own mind, and their constant encouragement of my independence. All for which I remain intensely grateful. (I also vividly remember the owner of our favorite restaurant asking me as a toddler if I “liked my din-din” and my dad teaching me, at three, to say, “It was a gustatory delight, thank you,” because he thought it a fun lesson in the presumption of competence. (He also just abhorred baby talk. See: presumption of competence.)

Now, I’m happy to debate my possibly skewed perspective on the incident until the cows come home. I’m happy to tip the whole interaction on its side and peer into it as objectively as possible. I am happy to confess that I may well be oversensitive and insert autism where it doesn’t belong or even that I may have embarrassed my kid. (Not happy that I might have embarrassed her, of course, but okay with saying it.) I may well have done either or both, and I’m grateful to those who shared their thoughts so that I can arm myself with a little more insight in the future.

But the post came down. Because I simply couldn’t keep up with moderating comments like those that I deleted early on from the guy who claimed that “all children suck at ordering” and “shouldn’t ever be allowed to speak in restaurants,” or his buddy who followed later flinging horrific insults along with the R word and the F word as though that could somehow be okay on a page called “Diary of a Mom.” I banned three people from the page (though I’m fairly certain that two were the same person using different accounts) because their comments were vulgar, way, way, way out of line and attacked children and other readers by name. I deleted all of the comments that they made and all of those that were addressed to them in return. I deleted comments that were very supportive of Brooke but that called the barista names. I deleted the one that said that they felt sorry for Brooke because her mother is a f*%&ing idiot.

I tried desperately to keep up, even as other readers began to implore me to ban some of the most offensive posters from the page, saying that their sacred space no longer felt remotely safe. I kept trying because I believed in the dialogue. I believed that it was important to talk about – to think about what we say vs how it might be perceived and how it might feel to others. To hear from both those who thought my internal reaction justified and those who felt that I was way off base.

But finally it was too much, and I gave up. I posted the following on the page:

All, I deleted the last post. As important as I think the dialogue was, it took a nasty turn right out of the gate. I deleted numerous comments and banned three people thanks to personal attacks, incredibly ugly words, and a total lack of respect for other readers. As much as Diary means to me, spending time with my children is far more important to me than policing comments. Thanks again to those who respectfully contributed to the conversation. Have a great day.

It made me sad. It made me wonder if being open is worth the cost. It made me miss the days when Diary was a small community of thoughtful, respectful members who often disagreed with me and each other, but almost never slung mud, and nearly always learned from each other.

A reader left a comment echoing the refrain in my head.

I hate to say this, but it seems like the page has just gotten too big! It was so different a few years ago… Sorry, Jess!

I wondered if it was possible to bring it back. To somehow reel in the staggering growth of readership that feels like amorous bunnies left unattended night after night. I pined for the simpler times when I never could have imagined, in my wildest nightmares, banning someone from the page.

But today I’m convinced that neither shutting down nor going backward are the answer. I have always believed that we can neither learn nor hope to teach others if we preach only to a sycophantic choir predisposed to agree with our point of view. (See current Congress.) If we hope to sensitize the masses to the experience of our families, then so too we must allow ourselves to remain sensitive, no matter how hard that gets.

As the Diary community grows, I’ll have to adapt and evolve to keep up. Perhaps I need to start to pick my spots more carefully. Maybe post more here on the blog than on the Facebook page, where space is limited and truncated stories leave out details that I can’t count on a crowd that doesn’t know us to fill in on their own. That’s fair.

I don’t know what the answer is yet. All I know is that it will be an imperfect journey to find it. I’ll screw up and fall down and say things that I wish I hadn’t. I’ll learn something every time I do. I’ll pull posts when I simply can’t manage the fallout, because I have children to parent and a life to live. But I promise you this – I will keep at it and I will keep trying to get better at it.

Because I know no other way to learn.

35 thoughts on “of bagels, amorous bunnies and the evolution of diary

  1. I’m sorry that your post was treated that way. You don’t deserve that under any circumstances. I have always taken issue with people speaking in what I have always called, “third person, invisible” and I certainly remember both stories that you told vividly and I would still do the very same thing today. Children deserve respect as much as adults deserve respect. Your posts deserve that, as well!

    Love you,

  2. Your blog, your FB page, your stories. Plain and simple.
    I too am sorry that it deteriorated that way. As your page gets bigger, Brooke’s stories will touch more people through one of their friends “liking” your status. Many people will read it, and the minority will comment. Know that you’re doing so much for acceptance and understanding by sharing what you do.

  3. I watched that comment thread unfold… I have to admit having the same thought – there are too many people here! But then again, how awesome is that (incredibly annoying to put it mildly in those kinds of situations that you refer to,yes, but…) how many more folks are there listening now to you, and to the stories, and somehow to all of us, and are learning about this amazing community….. It’s a double edged sword, but you are handling it so gracefully. I don’t envy the workload you have with the page, but I am in awe. And for the record, that barista should have asked Brooke directly, autism or no. 😉 hugs.

  4. And maybe it’s just the Pollyanna in me but I don’t understand the commenting just to be mean. Respectful debate and dialog is one thing and should be welcomed. Name calling and abusive attacks have no place in these conversations. Do people not understand that on a public page like Diary we can all see what they write? That includes their friends, family and their children. I don’t get it.

  5. I am sorry that your explanation of an interaction took such an ugly turn. Please keep sharing your stories. They are meaningful as is the respectful discussion about them that ensues. I cannot imagine how difficult it is to deal with that flood of negativity, but thank you for doing it. As a long time reader I would be bereft without your blog. if we, as a community, can help you in some way, let us know.

  6. You’ve always had an open mind and great big loving heart. You’ve helped so many people with your honesty, humor and by sharing your family’s story. Don’t let a few bad apples ruin it.

    I’ve got your back.

    Love you,


  7. Thank you for repeating the original post, and for your thoughtful response to the situation. I had a moment of panic when you were reminiscing about the good old days of smaller community, I feared you were going to close shop or cut your readership back. I wasn’t part of your world then. I am better for knowing you and others traveling our journey.

  8. When I was younger, I was painfully, literally-hiding-behind-my-mother-for-protection shy. Teachers talked around me to my mom in hushed tones, worried I would never speak up for myself. My mother constantly encouraged me to talk to others- at the store, at church, in restaurants, even on the phone, which I dreaded. It was hard at first- I clearly remember it being so, so hard, but as I got older, it became easier- never easy, but easier. In fact, to this day, my stomach turns in knots whenever I have to make a phone call to anyone that’s not family. Because my mom refused to allow her voice to speak instead of mine, I was able to learn to stand up for myself, to figure out where I belong in this world. I will do the same for my boys as they get older. Because my children are every bit as important as everyone else, and should be treated with the same amount of dignity as everyone else, they will find a way to make their voices heard, too, and I will support and encourage them in doing so. What you’re doing with Brooke is a good thing, a very, very good thing. And as for the Facebook mess: there’s a good reason why, in this painful, long, sometimes vicious month of April, so many cling to you. You’ve created a safe space for all, and I’m sure you will continue to find a way for it to stay safe for all. You have too many supporters who want to hear Brooke’s voice who won’t allow a few jerks to ruin this experience.

  9. I just read your article on this touchy subject. I am in agreement with you about keeping the group smaller or “closed” as far as the webpage and FB site goes, and for good reason as you stated here. While it may be the heart the seeks to share our experience with others in order to expand thinking and grow compassion, it inevitably meets with those who only care to smear and annihilate those who aren’t on their plane of thinking. Some even seek out sites to “flame” those they not only don’t understand but want to rage against, no matter what their illogical and insensitive reasoning.

    I want to thank you for sharing this story. It showed me that I am not alone. It was important that I read all the reasons I, too, may have been rude or insulting or any other derogatory fillintheblankism an opponent can think of. I guess it all comes down to this. Being human. Being respectful, courteous, kind and loving to all we meet.

    In my family, I, too, have dealt with these situations time and time again with my mother when she visits my home. She talks directly to my daughter, who is “normal”, while barely acknowledging my son. All the while, speaking around him and then the invisible wall, she reaches for the goodbye hug on the way out the door. Each and every time, I have always said something like, “Geez, Mom, he’s right there. Ask him.” She comes around – until her next visit, and then it repeats itself. I had a grandmother who was mildly schizophrenic, who lived with our family during my entire upbringing. Whenever my grandmother would go into one of her mild episodes where she spoke of how she felt, my mother would say, “She’s on the warpath.” I always knew it was wrong, because it felt wrong, although I didn’t have the words to express at the time to my mother. Not only does it belittle anyone’s esteem, it draws a divide between people. The relationship never quite gets off to a comforting start.

    I always thought that adults should know better, and they really should (WTF?). I am one to be assertive since I was very young. It has gotten me in trouble with those who would like me to shut up. But I have never shut up, and for my childrens’ well being, I never will.

    Love your page and everything you share. And never shut up, please! You are one of the many of us who need you as our beacon.

  10. When I saw the second post on your facebook page it took me a while to figure out what had been posted that could possibly have caused that kind of reaction (and I’d come across your other post earlier) and when I finally saw that it was the bagel post I was shocked, because I really saw nothing wrong, or inflammatory at all in how you responded.

    I just had to write a quick comment here though, because I really hope you don’t post less on facebook! Your posts brighten my day, just about every single day (and being hormonal and pregnant I also get teary, although not bad way, because I can relate so strongly, when I read some of them too!).

    The space that you’ve created is amazing and inspiring and teaches so many people and I hope that a few not-so-nice people (trying hard to not use mean names…) don’t ruin it for everyone who loves your page!

  11. Just a thought perhaps we all get so wrapped up in our own world that sometimes we forget that others may have difficulties (often hidden too)… Perhaps the server did…
    That are world is becoming increasingly pressured for all of us. While the store was not busy perhaps it had been earlier, perhaps he is dealing with other things in his own life.
    I have learnt a lot in this journey that sometimes things are not always what they seem. Sometimes we expect too much understanding from others and most of all there just are never easy answers to all this….

  12. I watched the comment section deteriorate on facebook and honestly, all I could think was, “there are so many microaggressions up in here.” It would be like a person of color trying to say how uncomfortable they felt being watched by salespeople in a store, and then everyone responding, “Oh, I’m sure it’s not you, you’re overpersonalizing this, I worked in sales and we don’t do that.” I’m sure no one intended to be hurtful… we all just internalize these systematic societal biases, and then they leak out when we’re not paying attention. Many people say that microaggressions are harder to deal with than outright discrimination, because the little things make you feel so invalidated. Anyway, just wanted to throw in two cents from an academic perspective.

    Sorry the page is getting harder to manage. Keep on rockin’ out with your bad self, and be proud of the work you’re doing here. This is a great community, whether you’ve got 2 followers or 2 million.


  13. Dear Jess,

    You hit the spot with this one…how our carefully nurtured internet communities (started on blogs) have been troubled, tossed and changed forever by Facebook. So many more people are reached, but the attendant growth brings difficulty. I’m in a similar situation with another group, and your post has helped me see that going back to the blog for thorny things is probably a good way. But it’s hard.
    I am grateful for the work you do and the witness you bear.

  14. Jess,

    I am forever grateful to you, your efforts (which amaze me), and the voice which you have awoken within me. Thank you. Thank you for sharing your family’s ups, downs and in-betweens so honestly. Your words are encouraging.

    Thank you,

  15. I hate that wonderful, well-written blogs eventually gain enough attention that they attract not so nice, not so respectful people. And that that causes the authors to consider whether or not they should continue being so open with their readers. I totally get it, but it stinks. Just know that there are so very many more of us that gain so much from you sharing your story and really appreciate you opening your and your families lives to us.

    (Also, I grew up on Long Island – and spent many a late teen night at TGIFridays – – and now live in the Boston area (Charlestown) with my two boys, one of whom is diagnosed on the autism spectrum… so I feel especially connected. 🙂

  16. Jess – I’d hate for you to have to limit the number of people on Diary, but there have been several posts in the last few months where moderating comments has interfered with you spending important time with your family…perhaps you need to consider recruiting other moderators?

  17. I’m really glad you blogged about this, because the curiousity was burning – I was hoping that you were in blog-creative-mode with it. Personally, I’m totally in your court. Sadly, our culture generally treats children like 2nd class citizens without brains or personhood and it’s frustrating. Add special needs into the mix? Grrr. If he didn’t have challenges of his own, then to me he was doubly disrespectful, because he wouldn’t listen to YOU or to Brooke. I just don’t get it.

    I’m sorry things got so out of hand for such a minor thing. Some people just like to stir the pot – some people create pages on purpose to do this (sick, but true) – and I learned a lesson from letting a page like that upset me; read more of the page before commenting. That actually takes thought and a few minutes of “work”, so people who don’t know the page and are lazy won’t do it. Don’t know if it would be more or less work to create a closed group and invite the “real” fans in or not… whatever works best for YOU.

  18. Thank you for fully explaining the situation in the blog. There were points that I jumped to (busy Starbucks, etc, etc.) and reading reply comment threads on FB is too painful and I didn’t see the additional comments you added. FB is very easy for people to spout and hit submit. More detailed posts that need more information and words may be better on the blog, where your loyal followers will go to read. You may want to add trusted community members to monitor the FB page; I can’t imagine the time it takes for you to do this!

  19. Jess, a lot of people [ … ] have no business commenting on your page what so ever. You should have kept your post up and let the other moms, dads and family members take care of responding to [them]. You did the right thing with Brooke. No child should be treated like they’re invisible. The only way a child can grow is by doing things for themselves, with mom close by of course. Keep doing what you’re doing. With kids like ours, we have to do everything we can to some day see that they are at least a little independent. Thank you for being you. Just keep doing what you do.

    • Donna, thank you for your comment. In the interested consistency in moderating, I’m going to edit out the name calling part ;). Please let me know if you’d prefer that I take the whole thing down instead. I just want to make sure you’re comfortable with the edit. Thank you for understanding!

      xo Jesd

      • Jess, not a problem. I just get very upset by those who don’t have the understanding of people that are not like ours. My son has Crohn’s Disease and lost his colon and rectum last year but has had so many complications that we have been at Seattle Children’s Hospital since July 4th. It just gets very “old” when you have to constantly remind people to talk to my son not me, ask him the question not me, tell him what you need not me. In the past 9 months, he has had the best life skills lessons ever, since he hasn’t been in school now, for 2 years. Anyway, thanks for the edit, sorry, sometimes, you know, things just happen. I read you every morning before I get out of bed then call my husband and read it to him. Thanks again.

      • Oh my God, I’m so sorry. I can only imagine 9 months inside the hospital. Sending you both all the love I’ve got. xoxo

  20. Your loyal readers love you and are here everyday cheering for Brooke and your family…. Its so sad to see it get out of control like this

  21. I don’t envy you and your large following. I am saddened that it brings such anger and animosity with it. You are sharing the wonderful world of Autism with all of us, teaching us how to view Autistics (in this case my son) and you are attacked unnecessarily for doing so.
    I believe you handled the situation EXACTLY as you should have.
    I would have to agree with Donna, you were sharing your perspective of a situation, you are the one who witnessed the body language, the nuances, the deliberate avoidance of your daughter, and the world needs to learn how to treat those with Autism. We could look at every situation and say that person was having a bad day, they’re uneducated, they’re just like that…we never know. All we know is how our family is being treated countless times by society.

  22. There’s something both indefinably exciting and incredibly invasive about how open things like pages on Facebook (and Twitter retweets and so on) are to basically anyone who comes across them and feels like talking a look and adding their two cents. If it weren’t for that kind of open-ness, I (and so many others) would never have found your blog. And if it weren’t for that kind of open-ness, you wouldn’t have to deal with so many people who consider their offhand opinions to be more important than you and Brooke’s experiences.
    I wholeheartedly support your choice to just delete posts that seem to attract and accrue negativity and ignorance; they simply aren’t worth the time or the energy that it takes to moderate them. The real impact comes, I feel, when someone who comes across your Facebook page looks further and continues on to read a blog post you’ve written. Anything that doesn’t invite others to really look further, and engage with the experiences you and your friends and readers share is, at best, irrelevant, and at worst, counterproductive (in my humble opinion, of course).

    On the subject of the post about Brooke and bagels and Starbucks and personhood and all that jazz:
    1. I find it tells me a lot about a person when their response to a story about a societal/systemic problem is to claim that the story unfairly blames an individual person. Like, really, I love it (sarcasm) when I’m like “Wow, this one time this thing happened, and it was a good example of this widespread social issue that affects me/others,” and somebody instantly is like “Ohmygod, how mean of you to single out one person just to judge and criticize them!”
    2. A person will never learn that their needs and ideas are important if nobody ever asks them what they need or what they think.

  23. I think I’m glad I missed the actual thread. I’m so sorry that there was, clearly, a troll convention taking place! :/ I’m gobsmacked at the audacity of people to assume the worst and to bring out the slings, arrows, pitchforks and tar/feathers before taking a deep breath and a step back to make sure they’re seeing what they THINK they are–especially when commenting on the real-life-experiences of someone they don’t know.

  24. As I read your posts, I get defensive for no reason other than I am uncomfortable with conflict. I wonder what the autistic kids take away. I would rather teach acceptance by example. Helping people understand how to communicate comes from mirroring. Showing kindness and compassion will eventually get results. We all (autistics and NT) want to be accepted and liked. What you send out into the world comes back. It’s all about the giving. People will listen when they are not threatened. You can’t control other peoples reactions, but you can offer guidance without blame or shame. Everyone walks away feeling better. One incidence at a time. I am hearing impaired and find that if I expose my handicap and invite people to help me, most will oblige. Hope this helps. No need to give up. We all learn as we experience.

  25. Holy heck all I know is I love you for continuing to try … and for putting the “mom” part in the “diary” so well.

  26. I have enormous respect for your commitment to respectful dialog and your consistent willingness to examine your own assumptions, words and actions. Unfortunately, platforms like Facebook do expose posts to people who would never consider taking the time to read other posts you’ve written in order to get a grasp of who you are and what your blog is about before they blaze away with a negative comment.

    When I share your posts on Facebook, I do so hoping that your words will reach others and will create a more accepting, accessible and understanding world for all of us. I know, that’s kind of a tall order, but hey lady, that’s what you do. And yes, when a comment thread goes totally off the rails, deleting the post completely understandable.

  27. Hi Jess,
    My little guy is 11 now and not quite as verbal as your girl, but we pick and choose our moments to allow him to have that interaction with retail providers during low customer traffic times. Always at a place that motivates him like MacDonald’s for nuggets or Toys r us for video games! I usually will smile at the young person at counter and say “we” are working on our social skills today in a soft voice while he’s looking at our choices. then when my son comes over to the counter he’s addressed directly and has a positive experience. I let him pay and get the change all by himself. It allows my son to maintain his independence and hints to the service person that they are a big part of this interaction. Most of them step up and are happy to be made aware of the importance of developing these skills. (to be honest- it helps them work their own customer service skills)


  28. Leaving aside the substance for the practical for the moment (I need a shower and need to get it done before my friend’s son arrives at our house in a few minutes – wouldn’t do to shock the teens with a bra-less, unwashed mother in her housedress…)

    Maybe on a purely practical level it’s time for an admin to help you out? A trusted contributor or two who share your values and could help you moderate comments?

  29. I’m new to your world. I found your FB page through a friend and have made my way here. I find that blogs, and their comments, bring a deeper level of understanding.

    I’m sorry this happened to you and your daughter. I am a teacher, formerly special education and now regular education, and it often pains me to see things like this happen. It is unfortunate that so many people remain in fear of what they don’t know. It is even more unfortunate that some people chose to respond to your story in the way they did. It makes me wonder what ever happened to basic human decency?

    I am so thankful I found your blog and I look forward to reading more. Any window into a child’s life that I can find helps me do my job better.

  30. Pingback: I Am Ordering. Hear Me Roar | Pucks and Puzzle Pieces

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