So, The New York Times' blog, The Motherlode, ran a post about the wacky response I got on my piece for Redbook magazine. It happened Friday, while I was at the Blogalicious conference in Miami to run a workshop on great blog writing/ticking people off (OK, it was just about blog writing).
The gist of the Motherlode post: People can say some pretty insulting things online. Dave, who rarely pays attention to stuff happening in the blogosphere (ONE of us has to not be addicted to it) e-mailed me in the morning: "Honey, you're in the New York Times!" His boss had let him know. Excitement!
But as the weekend passed, I was a little bit astounded: Commenters were being insulting all over again. One mom accused me of writing the article to get compliments on my parenting; other posters seemed to be completely and utterly oblivious to the fact that my entire reason for doing Halloween in a different way was because of Max's special powers.
I don't expect every single person to agree with what I write, nor do I expect special treatment by commenters because of Max's cerebral palsy. I do expect some understanding that I approach life in out-of-the-ordinary ways to accommodate his needs. I couldn't help myself; I wrote a comment saying that it was irksome when commenters with "pumpkin puree for brains" didn't get it. Oops.
I'm lucky, I know, that this blog is basically a nice place to live, as are most of the blogs about raising kids with special needs. Negative, insulting comments bug the crap out of me.
Meanwhile, I need to get my butt going on that car wash costume I'm making for Max. What are your kids going to be for Halloween? And trust me, if you say they're not going to wear a costume when they go trick or treating, I WILL NOT CARE!!!
Photo/minipixel
I really want to know what is wrong with people. Really. Who thinks, "Killer idea, let's insult the handicap family who does things differently!" What is this, 1963? Should we just ship them all off to institutions as well? Gah.
ReplyDeleteThat's what happens when you hit syndication my dear! We all come to "Love That Max" because we revel in your storytelling and hearing about "normal" life -- whatever that may be for us. Altho your blog has a universal appeal (trust me, you're friggin hilarious!) So many typical parents just can't/won't/don't get it. They never will, so don't waste your energy. I don't really care "why" you do this blog...just keep doing it because you are dynamic, outspoken, smart and so much fun!!!
ReplyDeleteI saw how many people seemed to either completely over look that Max has cp, or who just have a hard time grasping the kinds of problems someone with cp (or other differences) may have.
ReplyDeleteTry not to let it get to you too much(harder said than done), but I don't think the general population has a grasp on SPD, it's not something one hears about unless there is reason to, and even if the average parent did hear about it they may think it's the new "fashionable" diagnosis and children would just "get over it" if we parents tried harder.
The reason we blog (or one reason I guess) is that the more these subjects get talked about, more people will understand what all these labels and diagnoses mean, unfortunately it's a slow process and there will be a lot of misunderstanding (or just plain meanness), but there will have been people who read the post and said "oh,,,so that's why"
Okay, I just popped over to the NY Times piece, and what I'd really like to know is how that woman who said you shouldn't take the kids out in normal clothes has enough time in her day to worry about that kind of crap. She should consider becoming some kind of life coach so she can help the rest of us figure out how to best organize ourselves. . .
ReplyDeleteMy first grader's favorite joke right now: "Brendan says he's dressing up as the scariest thing in the world for Halloween -- himself!!" So, there you have it.
SO I'm going to write something that could throw the very positive relationship shared between the US and Australia in jeopardy. My fellow Aussie's might come to blame me as the commenter who changed our way of life, should some of those crazy pumpkin puree folks start a "Halloween Party" and get enough people elected and then declare war on our Australian way of life.
ReplyDeleteOkay, here it is...we don't really do Halloween here. People ask me about it and I miss it because I love dressing up and of course, miss the excuse to buy giant bags of candy to eat, uh, i mean give out to kids...and there are decorations in stores and some kids do dress up but no one trick or treats...so guess if nothing else, I've just put a huge dent in Australia's tourism industry. I guess all those haters would never dare come to such a horrible country that deprives children of such joy...we're horrible people here in Oz...spread Democracy and Halloween...
People can be SO mean online. I mean, really cruel - esp. under the cloak of anonymity. I hope this doesn't ever change your candor or honesty, because it's wonderful and refreshing and (I'm sure) a big part of why people come to your blog.
ReplyDeleteWe are going as the Yo Gabba Gabba crew - Chase (the toddler) will be DJ Lance Rock, the baby will be Muno, and I'm going to be Foufa. Not sure what I'll put DH in, as I've been pretty last minute about getting his costume together.
As a new reader, I want to tell you that I'm catching up and after reading about all the grief you've received...well, it just has me shaking my head over and over and over again.
ReplyDeleteThat said, add me to the list of candy givers who care not if a costume is present. But for what it's worth, last year some angry old man made my then two-year old daughter cry because she accidentally broke one of the ears on her costume. And if you're wondering, I managed to avoid going to jail--just barely. ;)
This year, I have batman, a butterfly, and a little flower. My husband, in the sake of both true spirit (I think?), is going as robin. He's a bigger guy and the "stretch" of the costume is very, well, stretchy. Suffice to say, I do not anticipate my preschoolers receiving any birthday party invites after that. :)
Courtney
www.lovewilllead.com
My Derek is going as a jailbird in full stripes!! Carson is his Police man with plastic handcuffs! We love halloween both giving and receiving candy.
ReplyDeletePlease don't give a rats ass about the negative comments by people who will NEVER get it anyhow. They are living a different experience. They have no clue what we go through on a daily basis and never will. I thank God for Derek and what he has taught me every day. COMPASSION, PATIENCE, and to realize each persons experience is different.
I come to your blog every day! Sometimes I think you are reading my mind about some of your daily topics (dog?, screaming, ice cream, fav colors). I think our boys are very similar in their disability and even resemble each other!! I thank you for sharing your life with me. You have moved my and touched my life in more ways than one. Keep it up!! We need you!!!
lol, I love that you said that! I'm sorry it ever got ugly for you though...it seems that no matter who you are or what you do, someone online will be rude and mean about it. Sigh...gotta love the power of the internet.
ReplyDeleteAnywho, I have no clue what I'm dressing my son as. He has Autism. I'm thinking I might put one of Dad's white button up shirts on over his clothes and call him a doctor:-)
I went back to re-read the post as well as the comment and the thing that I find absolutely beyond comprehension, is the following quote:
ReplyDelete"I just hope that folks don’t read your article and all decide to take the easy way out."
There is not one single minute in time, day or night, Halloween or otherwise, that is EASY when you have a child with CP. In fact, I have come to find that Halloween is one of the hardest days of the year for our Max.
Whenever I am confronted with insensitivity, I usually just reply, "ok...spend one day as me and see how you feel."
I can't believe that.
ReplyDeleteObviously, and gratefully, their not parents of kids like ours.
How said if they were to be...
There's something about being behind a computer screen that seems to give people a license to be a rude moron.
ReplyDeleteWe need to find those licenses and take them away.
I just found the negative comments baffling. It was like they didn't actually read the piece or something. As the mom of four kids with sensory issues, including one with Asperger, I thought your Halloween solution was brilliant.
ReplyDeleteAnd my special powers kids are going as superheroes this year! Perfect!
Ah, Ellen, it's so unfair! Good writers don't get to choose what pieces make them famous.
ReplyDelete:)
I've long observed that nothing reveals a person's personality defects like how they respond to kids & adults who are differently abled. It can bring someone's "ugly" to the surface in record time!
But it also brings out the best, most beautiful parts of people.
Keep scaring us with more beauty.
Lisa D.
aka motherhoodmag
It is so clear that that woman who responded to your article would have no idea how to handle a child with any special needs.
ReplyDeleteShe sounds like a real "hoot" and perfectionist who could not stand anyone "messing up" her perfect expression of the holiday.
She needs our prayers and hope that someday she will be released from her burden of having to control the world so she feels better.
It's an internet thing. People who are angry or disturbed or have low self-esteem are able to lash out and feel self-important with no consequences.
ReplyDeleteYou don't have to read the comments. You don't have to take garbage into your brain. You aren't obligated to pay attention to people who are hostile for reasons that have nothing to do with you. You're obviously a great and devoted mother, so remember that haters gonna hate no matter what you say or do.
LOL...I just got an ornery idea! Dress him in whatever he wants and when someone asks "who/what is he supposed to be?" tell them "neurotypical" ( or dumb it down and tell them "an ordinary kid")
ReplyDeleteI am always amazed at how nasty people can be, on the internet or otherwise. And how do all the people have time to leave all these nasty comments? Who makes time each day to say something nasty to strangers? Ugh.
ReplyDeletepersonally, i loved your idea. the negative commenters clearly don't have an idea of what living with a kid with special powers is like. there is so much more to halloween than costumes i think...it's also about going into your community, meeting your neighbors, practicing social skills.
ReplyDeletemy son will be about 21 months on halloween. he's non-verbal and has a tentative autism diagnosis. i got him a penguin costume with a little hood since he likes having his ears covered, but we'll see if he actually wears it. even if he won't though, i'm still going to take him car to car at "trunk or treat." i think it'll be a good way for him to practice eye contact and his signs for want, please, and thank-you.
Here's an interesting resource list for Halloween costumes for wheelchair bound or sensory kids...lest we be accused by more people of ruining the holiday for everyone.
ReplyDeletehttp://bit.ly/bHbEDq
Unbelievable... and yet sadly not.
ReplyDeleteFar too often I am in shock about how people ignorantly and cruely judge and treat one another.
Sigh...
Oh well -- at least that is only the minority. And the rest of us rock! ;) ***wink***
It's like the internet gave people permission to be raging a$$holes. I wonder if they would be so obnoxious in person...well, I take it back, maybe they would.
ReplyDeleteI do care if kids don't dress up and ask for candy. But that's b/c I LOVE H'ween and love dressing up, and assume that other kids do too, and they're missing out. But if kids don't WANT to, or have issues with dressing up, they can still have candy at my house.
I am secretly hoping Max's car wash costume spurts suds. I can't help myself, I have an overactive imagination.
E will be a praying mantis this year--animals with long legs tend to make pretty good loftstrand costumes. Little Sis Vivian will be a bumblebee...E asked if she could take a bite out of Viv "like she saw a praying mantis do on Youtube". Hmm.
Wow...just wow. Some people!
ReplyDeleteIt amazes me really. I got called on a medical bill the other day I have been paying on, but because I didn't have the full amount right now the guy told me I couldn't use my sons stroke as an excuse..um yeah I can buddy. Anyway, people amaze me in all facets of life regarding special needs children, and the smut that pours out of their mouths. Good luck Ellen!
ReplyDeleteIn Minnesota, where I live, kids end up having to wear coats over their costumes for trick-or-treating most years and we still enjoy our 'parka'd' Halloween!
ReplyDeleteI wanna say that the things people say never surprise me, but they really do!!
ReplyDeleteLittle Bird is going to be The Cat in the Hat. Don't worry, I'll post pictures!!
honestly, Ellen, I can't believe costumes is such a big contraversy. Like there aren't more important things to be self-righteous about.
ReplyDeletemost of these nay-sayers would never have the guts to say stuff like this to our face.
they're kids for crying out loud. KIDS!
Really.. I am a naysayer on the Internet and in real life.
DeleteI commented over at Redbook, but will say it again. Ellen, you are amazing and your children will be better people because you didn't make them conform.
ReplyDeleteThey are showing us something for Halloween that we could all learn. Just being. They are who they are and made their choice about NOT dressing up. Kudo's. Wish I had had that confidence growing up and into adulthood.
My oldest will be a policeman, the youngest wants to wear a princess costume like the one I wore a zillion years ago. He found the photo album and he is fixated. We've tried other suggestions but he's not budging. My mom is ready to sew it up in 2 shakes if he insists; my dad is kind of shaking his head but dealing with it. I guess we'll make a splash on the street this year! What else is new?
ReplyDeleteStopping by from 5MFSN and just read the Redbook and NYT articles. I loved your Redbook article, sounds a lot like our experience (our boys have autism and sensory issues), we made ice cream a Halloween tradition too :).
ReplyDeleteNot sure why anyone would be so rude as to accuse a parent who is tailoring the experience to their own children of "ruining" Halloween. Last time I checked, the whole point is for kids to have fun, not for kids to entertain adults with their costumes (sheesh).
This year my 5-yr-old is showing an interest in Halloween for the first time - he wants to dress up as Pilchard (cat from Bob the Builder). Not sure if he'll want to do the trick-or-treating or not, we'll play it by ear. My twins aren't interested in costumes this year (last year I made them Pokemon costumes) so they'll be going as 4th graders (ie. no costumes, lol). If they want to trick-or-treat that way it's fine by me. We just go around the neighborhood anyway (it's a small neighborhood, so it doesn't take long, we like to keep it low key). I told them that if anyone asks they can say they are dressed as each other (since they are id twins) :).
I agree with Felicia, you are an amazing mom and should not make your children conform. I can't believe the arguments going on around your Halloween article in Red Book. It was beautiful. If my children didn't want to dress up, I wouldn't make them and I'd take them out. I have a child who's very different. I've learned to embrace his differences, too, rather proudly. I don't want to be judged for it.
ReplyDelete