I had an attitude-changing experience at BlogHer 2012 HealthMinder Day last Thursday. In the morning, I moderated a panel with Kate Canterbury and Marisa-Howard Karp called Blogging About Your Child With Special Needs (you can see live-blogger transcripts from the day here). We discussed why we chose to blog, how much we do and don't reveal about our kids, how much we've given and gotten in return. I mentioned an old Talmudic saying, "He who has saved one life, it's as if he has saved the world." Blogging's been similar for me: Every single time I get a comment or email from a mom about the inspiration found here, I feel as if I've inspired the world.
Later, I was at the Overcoming Burnout session, listening to Tanis Miller, Julia Roberts and Susan Senator. Susan spoke of the day she and her son, Nat, were in Boston Commons watching some jugglers. Nat has severe autism and some "mannerisms," and as he stood there doing this thing, Susan got her her guard up because she assumed bystanders might laugh at Nat. She was, she told us, prepared to snap photos of them on her iPhone and post them on Facebook with the caption "See who laughed at my son!" And then: Nobody laughed. The lesson she learned that day, she recalled: "I should try to chill and enjoy myself."
It could have been me standing there, telling that story. Because my defenses are always raised when it comes to Max. I am hyper-aware of people staring, of kids who might make fun of him, of adults who shun him or give him that pity stare. This instinct comes from my fierce desire to protect him, and from my desperate wish that people wouldn't be unnerved or scared of his disabilities.
It's been this way for years. When Max was about three, I started seeing a therapist. I sat in her office during our second session, crying about how lonely I felt; a group of women I'd been friendly with weren't having Max and me over for playdates. I mused about whether they felt uncomfortable around him or me. "Maybe it's not them, it's you," the therapist said. Wha?! I wasn't prepared to hear that, and it upset me even more. I stopped seeing her soon after.
Only years later did I realize that even if she'd been blunt, her words contained truth. I am sure back then I was throwing off all sorts of "Don't treat us like aliens!" pissy vibes that must have been off-putting. Sometimes, I still throw those off.
After Susan finished talking, I stood up and told her how much I related to getting ticked off about people staring, something I've vented about. Lately, I've been trying to diffuse situations with staring adults by saying, "Would you like his autograph?" Humor helps. But in general, I had to acknowledge that day, my defensiveness about Max is something I still need to work on. It can only help Max. And, as my friend Kate has noted, my blood pressure.
Like I say, I keep right on progressing developmentally, along with Max.
I could not agree more, Ellen.
ReplyDeleteAs my best friend, Becky, told me recently, "You worry too much about what other people think. People who don't matter." and I realized she is quite right.
oh Ellen I have those moment too when Coop is yapping away not making sense and I worry about peoples perception of him as he already stands out with a mobilty aides etc......and indeed totAlly my own problem....oh and my kids have watched your kidss dance to Carly Ray about 20 times today they love it!!!!! I also noticed in it how Maxs concentration with the dance waivers as he sees that big yellow rruck drive past! Love it!
ReplyDeleteCool. Good on 'ya.
ReplyDeleteOr as I learned in the park not too long ago, there are nasty people in the world, but most people think nasty people are nasty, and will come to your aid.
ReplyDeleteI'm sort of here in a ball, crying. I get this so much. I've stopped being social because it's SO MUCH EASIER to not have to worry about what people think of my son. When we have been invited over places, I can't relax unless I can SEE Casey, and thus, I don't get to just sit and be a normal adult. EVER. And that isn't Casey's fault. Casey is usually fine. It's me. It's so me.
ReplyDeleteThis was a beautiful post.
I am guilty of being ready to snap when I feel like someone is staring at Matt. He's non-verbal, but he likes to scream and cry at full volume and that tends to get people's attention. When I take him out he always has his hearing aids and AFOs on so we get a lot of stares, so I just catch their eye and they usually look away. Lately the kiddos out there have been nicer to him than adults and will at least ask why is he wearing the gear.
ReplyDeleteI think you are in my head. I am so overly protective, It actually affects my daughter,who is seen running behind me all of the time. I worry that his feeling will be hurt, I worry that people wont accept him, when in reality, he is a funny loving child. I find myself trying to protect him and worry that i am excluding him because of it.
ReplyDeleteHelp. I never thought I needed a therapist but now I am rethinking it.
I have those moments all the time, where I am so worried about other people staring at my son or thinking I'm being a bad mom b/c of his behavior. And I need to go back to therapy - went in my mid-20's pre-mommy days & it helped a lot.
ReplyDeleteIt would be so great to be the kind of gal who is super cool when it comes to having enough confidence to not worry about what strangers think.
I am the same way, but then I realize that typical children stare and comment at things and people that are different, but not out of malice. It is usually a simple fact. We met a woman who was a dwarf, and my daughter (who is a special needs kid) commented that she was not very tall. This was not a judgement, just an observation of a fact. I shrugged and said that some people just don't grow very much. She agreed and went to play.
ReplyDeleteThat said, I will address a comment when I have the chance to educate someone. Once my daughter walked past an elderly man and he watched her and commented (loudly) "She walks like Frankenstein." He went past me before I could get my head together, but I marched up to his female companion and said, "She has cerebral palsy and we think it's a miracle that she can walk at all." she was mortified and I heard her yelling at him behind me. Victory!
Thanks for sharing your deeply personal "aha" moment with us - and your therapist firing, too. You're such a wonderful Mom, Ellen. Max and Sabrina are lucky to have such a fierce Mama bear in their corners!!!
ReplyDeleteOne of these years I'll go to this thing called BlogHer! I wish I could have heard you talk - I'm sure you were awesome!!
xoxo
How YOU handle being a mom of a special needs kid really does affect how others react to you and to your son. Years ago we had a mom in our "circle" with a special needs child. She really made me feel uncomfortable with her rants about her child and unrealistic views. If she'd just been honest and relaxed about him it would have been no big deal! SHE made it a big deal and I found myself uncomfortable around her (and as a result around her child). I have several friends with disabilities BUT they're comfortable with themselves and as a result I'm confortable with them. I'm not articulating this correctly. But it IS a two way street.
ReplyDeleteI do agree that it is probably from our own issues and insecurities. We are only about a yr into the special needs world with our daughter Ellie and I get irritated by comments and stares as well. I usually point out staring people to her and tell her wave! She is nonverbal and her yells and screams for attention def get EVERYONES attention. I think sometimes it is so hard for me to accpet this is now our daily life I assume others are not accepting either when in fact they are.
ReplyDeleteI think acceptance comes, too, with the years. I've been doing this for nearly eighteen, and that part of it -- the staring, the anxiety stuff -- is one of the few things that's gotten easier! While I occasionally feel irritated by it, I no longer feel so defensive. I also know "my people," and they far outweigh the others.
ReplyDeleteGreat post --
Wish I had been there to hear that. I do get very defensive and assume that people are watching and talking... but sometimes, they really aren't.
ReplyDeleteSuch a great post Ellen and so true. I was a self conscious person to begin with so adding a special need child just made my anxiety that much worse. I think I've found more confidence over time but there are still days it's hard to get past it.
ReplyDeleteSo great to meet you, by the way!
I think that this can be applied to just about everyone - including myself! Sometimes what we think of as stares are actually just people looking. And that ought to be okay. Avoiding eye contact and/or quickly looking away is another reaction that doesn't need to be taken offensively. I have often looked away from someone having a tough time or with different abilities simply because I didn't want to make them uncomfortable.
ReplyDeleteNasty comments/teasing is a whole different animal.
It is so hard not to put those defenses up, isn't it? I struggle with that constantly.
ReplyDeleteI've told you this before, I assume that people mean well, and I wait for them to prove me wrong. Sometimes people who say the wrong thing mean well, I will make allowances.
ReplyDeleteIt's one of those things that comes with age, I think. Being a bit older than the rest of the pack helped me this way.
I got so much out of Thursdays sessions!
ReplyDeleteI can so relate. A few weeks ago when Noah, his sister and I were in the park, I caught someone looking at him. At first I assumed he was looking at the way Noah walked. But then I learned he thought my son was cute. To the casual observer, Noah is a typical baby with no obvious delays. I've started wearing sunglasses when I'm out which helps somewhat. I used to get pretty defensive when it came to Noah's walking gait. But I learned a important lesson that day.
ReplyDelete