Tuesday, March 24, 2015

The trouble with social media birthday celebrations for kids with special needs


Yesterday, I read yet another story about social media coming to the aid of a kid with special needs who needed birthday love.

Odin Camus, 13, of Ontario, Canada, has Asperger's. He sent out about 15 invites for his birthday party on Friday, but none of the kids responded, per his mother, Melissa. So she went online to a local community group and wrote, reports CTV News, "I want his thirteenth birthday to feel special and like people care about him. I'm really struggling with finding a way to make today awesome for him, when it will just be us celebrating." She asked people to text his cell phone and wish him a Happy Birthday, and said she'd be open to other suggestions. People suggested she host a public event and invite people. So she planned a bowling night and opened the event to anyone who wished to attend.

Hundreds of people showed up, many of them strangers, bearing cards, balloons and gifts for Odin. The seventh grader got some 4000 text messages, along with many Happy Birthday messages on Facebook. The tag #odinbirthday was the top Twitter trend in Canada Friday night, and a whole lot of tweets poured in including ones from Canadian Liberal Party leader Justin Trudeau and Carrie Underwood.


Odin was gleeful. So was his mom. "Honestly, Odin and I have been pretty much crying all day," she told The Peterborough Examiner. "People are here because everyone knows a kid who struggles to fit in." She hoped what happened told the world, "You don't have to be bummed out—no matter how down you feel, there's always someone there. Always."

These days, a growing number of parents are putting up requests on Facebook for people to extend birthday wishes to their kids with special needs. Chad, a 9-year-old with autism in Frisco, Texas, ended up getting cards and packages from around the world after his Dad asked Facebook friends to make his son's birthday memorable. Last year, the Facebook page a Michigan mom created in honor of her son Colin's 11th birthday—a boy who, she noted, eats lunch alone at school daily and has a disorder similar to Asperger's—racked up millions of followers and good wishes.

These stories warm the hearts of many, to be sure. I'd like to say these stories warm my heart, too, except there's one thing nagging at me: What about the rest of the year? What changes for these children when the crowds go away? What difference does this make for them in their usual life, in which isolation is the norm?

Over on Colin's Friends page, he and his mom now do videos answering questions from people and raise awareness about autism and differences, a Good Thing. He's participated in an anti-bullying campaign and gotten to hang with cool people, including the Harlem Globetrotters. I can only imagine how exciting this has been for him. But when I scanned posts and photos from the past year on the Facebook page, I didn't see any that indicated much has changed for him socially off-screen. And that bummed me out.

I am not saying these children don't deserve the outpouring of support and good wishes—of course they do. But it's Facebook and Twitter, not the real world. What I'm saying is, these kids deserve so much more.

As happymaking as it may for a child to see all the "likes" and to have a blowout birthday party with hordes of people, what would make the most difference for kids like Odin, Colin and Chad are for other kids to get to know them offline. For other parents to reach out to the parents of kids with special needs and make playdates and hangouts. For other parents to make sure these kids are invited to their children's birthday parties. And, of course, for parents to make sure their children RSVP to the birthday party of a kid with autism or other special needs.

Stories like these give a false impression of a happy ending to the masses. Birthdays happen one day annually; life is meant to be lived 365 days a year. The greatest gift people can give to a kid or teen with special needs isn't birthday cards, birthday presents or social media birthday wishes. It's true inclusion. 

Image source: Twitter/@Cwalker1015

28 comments:

  1. Exactly. Inclusion is good. Has Max benefited from inclusion?

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    1. Yes, he has very much enjoyed the inclusionary programs he's participated in. I think ALL children benefit from it—interacting with people who don't have disabilities is the real world.

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  2. Ellen, I agree 100 % ! These stories bring attention to challenges some children face but what about a mom reading that that next time includes this child in a movie night Or just RSVP, a coach at the high school that includes this student in practice or as team manager, a bowling league that tells him to come join.. A neighbor that asks a child questions about school and his/her favorite interests. We as a community need to not just show up with a present and consider it done but look for other ways to be a part of other people lives !

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  3. Amen! These stories rub me the wrong way but I couldn't articulate why, thanks for putting it so well!

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  4. Hey -- I am writing on this topic today, and I couldn't agree more!

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  5. I'm all over the place with this. I can't decide if I love it or hate it. Then the cynic in me can't help but wonder if some people are starting to do it simply because of the "going viral" effect? I know how awful that sounds but it seems to be happening so often now that it makes me leery. My heart breaks for the kids that are being so obviously left out but wouldn't it be more helpful for the parents to call their school and ask for help on extending social bridges rather than reaching out to a world of total strangers? And, just my opinion, giving out your kid's cell number to virtual strangers is taking it to a whole other level. It's dangerous to say the least.

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    1. I don't know for sure, of course, but I think people do this because it genuinely makes them feel good, and it's simple—it takes just a few seconds to leave a birthday wish on a Facebook page, and it doesn't take that much effort to send a card or even a little gift. As for parents calling schools to ask for help with extending social bridges, in my experience, this doesn't really lead anywhere. It's not the school's responsibility to do this. A caring teacher might help, but that's about it.

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  6. I've never had this done for me. It can be a gateway for predators and haters, but it can be something nice to do for someone alone on their birthday.

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  7. i just wrote almost the exact the same thing on my FB page, Diary of a Mom (a reader told me that you'd posted this:)). I'm with you.

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  8. I agree with you on this Ellen. If people are kind enough to come to the bowling party thanks to a viral invite, why didn't the original 15 invited kids come? Also, it's one thing to come to an "event" for a disabled kid. It's quite another to be a consistent friend or companion.

    One other thought ... Perhaps there are some kids with Aspergers or other conditions who don't really care to be social, to have a lot of friends, to have a traditional "party". I assume Odin didn't feel this way, since he was happy with the response, but sometimes it might be the parents who are worked up about lack of a certain kind of socialization, while the kid may be fine with it.

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    1. I know what you mean: is it parents projecting their ideas of happiness onto their kids, or do these kids actually want it? From what I've read the kids have genuinely appreciated the gestures. But, yes, my concern is the lack of regular company.

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  9. I have been thinking about it and came to a conclusion. If young people see these moments often on social media, they may begin to think that the only ones able to make a person with special needs happy is a celebrity and anything that they do wouldn't be helpful. Just another reason to wary of this and its effects on inclusion.

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  10. Good points! It is awesome to send a card or present to some kid out there who has special needs and is going through a hard time. But maybe that can also inspire people to look around in their own "real world" and think of ways they can help the people around them. They won't have to look far to find a child who is similar to Chad, Colin or Odin. Making sure that child gets invited to your child's birthday party and is actually welcomed, talking to your own kids about other people's differences and how they might invite that lonely kid to come sit at their lunch table, or realizing that the 10-year-old having a meltdown in the grocery store is not necessarily "spoiled rotten" and realizing that he and his parents are doing the best they can.

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  11. I love the points you bring up here, Ellen...and I'm also wondering about what Odin's mom said here: "I'm really struggling with finding a way to make today awesome for him, when it will just be us celebrating" ... I get that she wants her son to have friends and all, but what's wrong with a family party? I'm not on the autism spectrum but almost every single one of my birthdays were just family celebrations, and they were plenty awesome. It kinda bothers me a little that the mother doesn't think her son can have an awesome time unless he has a crazy huge party.

    I'm not trying to rain on anyone's parade here...I love the outpouring of support for Odin and for all of the other children mentioned, and I 100 percent agree that inclusion needs to be a 365 days a year kind of thing! Like you, I'm just wondering if perhaps there are better ways to pursue inclusion than a giant birthday party.

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    1. I wonder that, too. But Odin's mom obviously knows him best, so I'm sure there's good reason why she thought to do this for him.

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  12. I agree 110%! Also, I worry about the child's privacy. Is it fair to the kids whose parents do this to essentially announce to the world that their kid has no friends and turn the kid into some sort of charity project? They may be lovely on the surface, but the sincerity of things like this are lacking.

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  13. I do agree that I don't like this trend. I have a number of issues with it, in terms of the way it is essentially singling out children with disabilities as being friendless and publicising it to the media, resulting in sympathy. It goes against inclusion as a lot of people are fighting for. However, I think at a core level, we should be teaching all our children about quality over quantity. Honesty over appearances. All of that good stuff.

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  14. An invitation to a birthday part is NOT a subpoena -- simply reviving an invite does NOT obligate a kid to attend.

    While at first glance it sounds awful that 13 yo Odin invited 15 kids to his party and not a single kid agreed to attend, there's a whole lot we do not know or that doesn't seem to have been taken into consideration, including, but by no means limited to:

    1. Was the kid genuinely friends with the kids he invited to his party? Or at least somewhat well-acquainted with the invited kids? Loosely defining "friendly acquaintance" as "has the other kid's phone/email and has communicated with them outside of class".

    (13 yos tend to manage at least some of their social lives independently -- so it's perfectly acceptable and not even "mean" to decline any invitation for any reason. Bullying is a pattern of behavior, so declining one invite from one kid doesn't Qualify).

    2. was there [something big] going on at the same time as his party? If it coincided with spring break (most kids away on bacation), a big religious holiday (a kid who has lots of Jewish friends will have a poor turnout if his party falls on Yom Kippur), some major game (like Super Bowl), etc.

    3. How far in advance were the birthday party invitations sent?

    (I grew up in a mostly-Jewish neighborhood, so age 12-13 = 18 months of 2-3 bar/bat mitzvah paties per weekend, with invitations sent 6-8 weeks in advance).

    There's also no nice way to say this: Everybody (kids, grownups, disabled and not) are entitled to be treated politely (as it stops the world from descending into anarchy) and kindly. Period. That's the bare-bones minimum required by the social contract. Everything and anything beyond that (including having friends) is gravy.

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    1. Wow ! I find your response to lack empathy for Odin (or any child in a similar situation), and your thought process is dismissive of his real struggles. Your statement ' everybody is entitled to be treated politely and kindly' is obviously something that you simply preach but do not practice ! Everyone deserves and needs to be loved, supported and included in their community. We have an obligation to TEACH all of our children this and to participate in our community and families to make this happen.
      For the record, I do not support this " one day inclusion" from communities but hope that it brings attention to the issues and fosters change and discussion about how we can all help to include everyone in our school, neighborhood and family communities enriching the lives of all.

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    2. In defense of Suzanne she made some very good points. Something as ordinary as not sending out the invites soon enough could be the reason for the initial lack of attendance, but it's being overshadowed by the kid's disability.

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    3. Nope – I really do believe, practice and teach my kids that they’re required to treat everyone kindly and politely. I don’t require them to LIKE everyone – because that’s neither reasonable nor within my control.

      And, again: A birthday party invitation is not a subpoena.

      There are delightful kids with SN (ditto for non-SN kids). There are kids with no SN who are total pills (ditto for kids with SN). A kid’s personality is NOT their SN. It is ludicrous to expect a kid to be liked SOLELY on the basis of their SN. It’s equally wrong to dislike a kid SOLELY on the basis of their SN. Disliking one PARTICULAR kid who happens to have SN is very, very different than disliking kids with SN, writ large.

      My eldest has a classmate, C, who has an ‘invisible’ SN that manifests behaviorally – an occasionally sweet kid who is grabby, has no sense of personal space, who steals/trashes her (and everybody else’s) stuff and will text my kid 100s of vile things an hour anytime he gets his hands on a cell phone. Both kids are 9. She (understandably) loathes him. She’s civil and kind to him. It’s more than many a grownup can manage.

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    4. Suzanne,
      Your points simply make no sense and not revelent to this discussion. I hope that what is happening to your daughter is being addressed appropriately by professionals through the school. I hope you can at sometime reconsider your backwards thoughts on social and community inclusion.

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    5. Would you have felt bad if you invited your entire class to have fun at your birthday party and NO ONE showed up or RSVPd saying they were sick, injured, on vacation, or observing a religious holiday? In your average class of 15-30 students, I don't think their schedules can overlap so there is one day that leaves them all unable to attend a birthday party.

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Thanks for sharing!



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