Friday, January 15, 2010

Mama Bird? Ha! I am a Mama Pterodactyl

First, thanks to all the lurkers who came out of the blog closet yesterday. Nice to meet you! I welcome you to keep commenting and enriching the conversations that go on here. The more perspectives, the better. You can also feel free to come babysit.

And now, I'd like you to meet my alter ego, Mama Pterodactyl.

When I was at the doctor's office with Max the other day, as we left the exam room a mom, dad and toddler were headed our way down the hallway. As they got closer I noticed the mother was blatantly staring at Max, who was wearing a bright green bib and drooling a bit. When we passed each other, she literally swiveled her head so she could keep looking at Max.

"Do you have a problem?!" I snapped, then kept walking as Max darted over to the sticker area to see if there were any purple ones.

I couldn't help it. I get fiercely defensive when I spot people staring even though Max never notices. To be sure, day-glo bibs call attention to Max. I have some bandana-like ones that look cooler, but that morning I'd grabbed the green one.

Still. That staring was maddening.

I know I should work on my reaction, as it's not doing Max any favors to hear me mouthing off. Nor do I want to spread the idea that moms of kids with special needs are angry at the world. It would be more appropriate if I said something like, "It's not polite to stare that way."

But when this happens, I lose it. It gets to me on many levels. It's a reminder that I have a child who is handicapped and not like other kids, and a reminder of how ignorant people can be about people with disabilities. It violates my sense of justice: He is a child, how dare you gape at him like he is a freak in a circus side show! And you are a mother, don't you know better than to stare at a child?! It also hurts to see this leveled at Max, innocent and beautiful as he is.

I feel protective about Sabrina, too. But I feel that much more so about Max, who is not yet able to verbally defend himself. I hope someday he can, should he choose to say something. For now, this Mama Pterodactyl will be there to guard him.


  1. Whoa! I was out of commission yesterday, and I am trying to get caught up here. You know what? I must be a Pterodactyl too. I feel the exact same way. I must be frank though. It somewhat pleases me to hear that we are not alone when it comes to getting those kind of stares. I mean; let's face it! Kids in wheelchairs are like Vegas signs, attracting dumb, deer-in headlight looks frequently. So, I thought it was just us. To hear that folks stare at Max surprises me since he walks and is so interactive and handsome and wonderful. Emma is all those things too, but I thought it was the CHAIR! You know, it's like I kind of expect it--the pity, the curiousity--especially from children. Adults kinda freak me out though! That thing with the swiveling, devil head really gets me raw though. Good grief...can people be more ridiculous! Some people really aren't very bright--really! I know that you feel like maybe you had some sort of responsibility to contain your emotions, but rude people like that don't tend to learn from subtle comments. I think that silly lady may have learned a valuable lesson that day. Hopefully, now if she passes some other special child on the street, she will think twice before she goes devil head.

  2. Ellen - I'm sorry you and Max have to deal with the curious and inappropriate stares of others. That sucks. I totally understand why you would snap. We are mama bears protecting our cubs! I hope and trust that the mom staring was simply pondering a life with a child with special needs. I'm more sensitive to this now than I used to be. Doctors told me that my now 22 month-old son had a good chance of being born with Trisomy 13 or 18, a fatal birth defect that causes severe physical and mental deformities. He was born perfectly healthy and I thank God every day for that. But I am very sensitive to anyone (including my husband!) saying anything in jest, like "That's retarded," or something similarly inappropriate. I will snap, "My son could have been 'retarded'! Do you think that's funny?!"

    Thank you for this post.

  3. Count me as a pterodactyl, too. When Daniel got his first AFO as a baby, a woman in the park did the same head swivel. She didn't have a "look at the cute baby" look on her face, but rather a "what the hell?!" expression. After a few minutes of it, I offered to put her eyes back in her head for her. Not my proudest moment, but sometimes we can only take so much.
    If only the people who stare at our children like foreign objects instead of the light of our lives knew how hurtful they were. I stand firm on my belief that such ignorant individuals are more disabled than our kids will ever be.

  4. Pterodactyl? I suppose that's better than being a rip-roaring a-hole, which is what I can be in that kind of situation! You might have asked Old Eagle Eye if she wanted to take a picture, which is what I do at the rare times when we're out of our "comfort zone" where everyone knows us.

    I'm curious--what did the woman do after you confronted her? Did she scurry away guiltily or did she just suddenly pretend like she was focusing on the fire extinguisher on the wall, or something? Did she apologize?

    Did she look you in the EYE after you called her out?

    I don't necessarily agree that you need to work on your reaction. I think that woman might want to work on hers, in actual fact. Your reaction seemed quite appropriate given the situation. That's a pretty obtuse and ignorant mother to behave that way--you've got to feel sorry for her kid, having that kind of example. You may have caused her to start doing a little thinking about her attitude and behavior--here's hoping, anyway!

    There is a difference between that kind of critical/judgmental, hawkish, piercing, "stare" you experienced, and someone who is watching/noticing/observing (and sometimes trying to figure out what the deal is, often because they've got a relative with similar challenges). You can see it in the eyes--there's a gentleness there that's totally different from the mean ones. There's also a better energy coming off those folks, whereas with the Swivelhead types you can feel this sense of unmerited superiority and moronic disapproval coming from the jerks.

    I don't think there's any requirement to be polite to people who are rude, anyway. I think it's normal to get a bit angry at people who are acting like crude asses. And when they're being mean to/about KIDS, they don't deserve ANY consideration.

    Keep defending your kids, don't back down, and maybe sign Sabrina up for some kickboxing lessons!

  5. Hi,
    I got yelled at once for 'looking' at a child. He was actually an ex student of mine out shopping with his aunt. I was 'looking' because I was trying to see if it was really him before I went over to say hello. Auntie was very apologetic butI could understand where she was coming from. It drives me nuts from a teachers point of view ( I teach in a special education specific setting) when I take the kids on outings.
    The only thing worse is the rude comments that people sometimes make, to go along with the stares.
    People who shop in the centre near our school are fine but we cop a lot when we go away from the local area.

  6. Its hard not to get defensive in the face of such rudeness. My fella would be inclined to have tantrums due to sensory overload so we get a lot of looks and 'tut tut' (I am such a bad parent!!). My standby line is 'He has special needs, what is your excuse?'. I am saving it for the day when I just can't help myself. It will happen:) Jen.

  7. Amy, yes, I sure hope that woman learned her lesson. Felicia, she just looked totally startled after I said something, like I'd just flashed her or something, but no apologies. You totally made me laugh at the mere thought of signing up Sabrina for kickboxing lessons. Colleen, that's an interesting take but somehow, I am dubious that woman was pondering what it's like to have a kid with special needs, she just seemed to be gawking at how Max looked. Jo, you are so right, ignorant people ARE more disabled in some ways than our kids. Sue, interesting story—it's good to hear things from a teacher's perspective. Jen, I like your, "He has special needs, what's your excuse?" line, I've actually thought about ones like that. But then part of me feels that I don't have to say a peep about what's up with Max.

  8. I say drastic stares call for drastic measures. If someone is crass enough to stare in that fashion, a polite "it's impolite to stare" wouldn't register.

  9. ARRGGG! I HATE this! It is one of my biggest pet peeve! It's bad if kids do it but when adults do it, I can't hold back! One thing I have started doing is if I see someone staring (especially kids) I push Faith up to them and say "Faith, tell them hello." It always knocks them down a bit. Yesterday, at Girl Scouts a new little girl was there, a second grader, no bigger than Faith. I saw her watching Faith and she made this aweful face when she saw Faith drooling. So I wiped her face and pushed Faith right up to her. Afer that, she started following us around and I even caught her standing next to Faith, holding the arm of her wheelchair!

  10. Candace, that is BRILLIANT. And you know, of course, what your tactic should be called: "In your Faith." :)

  11. Snarky question: how old is THAT child?
    Snarky answer: How old are YOU???

  12. I love the Pterodactyl image -- very appropriate.

    I think there are times when we're in "education" mode and mood, and able to be calm, cool, and collected and friendly, and other times when we're simply not. I remember one time I was waiting to pick my daughter up at school with my son with disabilities. There was a group of grade 6 students huddled together and they kept looking at Ben and staring. Finally I snapped: "Do you have any questions? Cause if you have any questions, I'm happy to answer them."

    That freaked them out! They started coming up with all kinds of "other" things they were talking about and that they weren't talking about us.

  13. Anger is a consuming thing to me when it comes to that sort of behavior in others when it comes to Bennett. People don't stare yet, they will, but they don't know as he still looks too young. But comments are made, etc.

    But I let it seethe inside, which is real bad. I don't let it out in the situation as you do. I envy that ability.

  14. I have to admit that I'm a looker. Not a head swiveling starer. I do my best not to be rude about it or even obvious if I can help it. I attribute it to my high curiosity. I have a horrible affliction that I want to know everything. This does not apply only to people/kids with special needs, people with injuries, words on their shirts, someone who laughs while reading something. I just want to know...everything. I hold myself back from asking questions a lot, because I know how frustrating it can be to be asked the same thing, by numerous people, innocent though it may be. I assure you, I don't mean to be rude if I am caught looking, I am simply too curious for my own good. I've always said it's a good thing I'm not a cat or I'd be dead a million times over.

    Also, let me add that you were perfectly in the right for reacting the way you did. That lady was not just a curious onlooker, she was VERY rude. I would expect that reaction from myself in the same situation.

  15. I know just how you feel. I get very protective of Sierra. She wears leg braces,so that always make people look. I always incourage people to ask questions,especially kids,because some one has to educate them,since it is so obvious that parents aren't doing it.
    In many ways there has been so many advances tword the treatment of people w/disabilities,we no longer keep them hidden from the public,they can go to regular schools,etc. On the other hand society hasn't evolved to realize that they have feelings just like everyone else & who really wants to be stared at? I am sure they would make the same comment as you did if you were staring at them.

  16. My jaw actually dropped when the mom swiveled her head to keep gawking...I mean, to look is one thing - but to keep looking is different story. I'd compare it to if a guy sees a woman with half her chest exposed...he's going to look. It's the keeping looking that isn't cool.

    Elijah is still young enough that people don't seem to notice his disabilites just yet. I know the day with come...not that no one has annoyed me, it's just that most people don't expect a two year old to carry on a extensive conversation, they don't notice he barely uses his hands, and the drooling can still be attributed to teething. I'm pretty sure the pterodatyl side of me will emerge at some point too and well, that's okay. :) Thanks Ellen.

  17. You go girl, I'm with you on this one. Someone so blatantly rude needed a wake up call like you gave her! Only one bit of advice... my son used to watch the "Land Before Time" movies and the little pterodactyl bird there was called "Petrie". "Mama Petrie" might be a little more user friendly! lol :)

  18. Pterodactyl Mom... so true!! I find myself observing kids of all ability levels in a totally different way now that I am a first time Mom of a little one with special needs. Especially kids older than my 18 month old. However I would never ever stare inappropriately. To be sure, if I had the pleasure of seeing Max I would be thinking please God let Henry be as happy and functional as that adorable little boy.

  19. Good for you! It's your right and your duty to protect your child. Maybe the next time that mother sees someone, whether child or adult, who isn't an exact replica of her perfect self (sarcasm) she will think twice about her reaction. Not only did you defend Max, maybe you saved another family from this persons ignorance.

  20. Ellen - so sorry you had that experience. Glad you had the courage to shock her! She needed it.

  21. No worries...I get you. I call myself 'Momma Lion' and I will roar when need be. We have to and there is noting wrong with it.

  22. My son is older, 10. He looks typical enough but people still stare and I just want to go up to them and say - "what are you staring at?" "Why are you staring?" My son knows it, even if he doesn't acknowledge it, he feels it. It makes me angry. At times we could be having a great time and then I see it - the stares and I'm like, what the heck?! I will catch myself noticing people who are different, but I SMILE at them and say hello!

    I wonder what people are staring at and why. I am so in awe of you and the comment you made - out loud - directed to the starer. You should have said what you did - jar someone out of whatever they were doing that was not right. It doesn't matter that Max didn't see it. What matters is that people respect each other and don't gawk.

  23. Thanks Felicia your comments are always great. I was thinking before I read your comment that I might "stare" because I am trying to figure it out and SO can relate to things and Ellen's post today made me wonder could I be giving the wrong message? However, I always smile and say hi to people too. I think as parents with special needs kids, especially a lot of years in, you learn to tell from people the difference. I actually laughed when I first read Ellen's post. No its not funny, but after so many years, people's stupidity is almost funny any more. Although its SO hard to believe some people know NOTHING of or anyone with special needs in their lives that would at least have taught them to act better??? I have met people that seem to think birth defects would NEVER be in their family. I guess they don't realize accidents happen every day.

  24. See, I do the opposite. Say nothing and simmer that I'm a wimp. I wish I would snap at some people once in a while. No, it's probably not the best to snap, but it's more than my avoidance.

  25. I consider myself a tigress--I wonder what that says about my personality?

    The teacher in me wants to educate everyone. I'm been thinking that Charlie should get a sign when he gets his wheelchair that reads "I have cerebral palsy, questions welcome." I've heard of other parents who use Candace's technique. Whatever gets you through I say.

  26. nice pic I think u did the right thing

  27. It's funny, but the staring doesn't really bother me. I think in the last four and a half months of walking through the grocery store with two people in wheelchairs I've kind of reached a threshold where I don't even notice the staring anymore. I mean, we're a parade. We should throw candy when we go by or something.

    The ones that really get to me, the people that make my blood boil, are the ones that not only don't stare, but they refuse to look anywhere in our direction. When we pass by, all conversation screeches to a halt and the person suddenly has an urgent need to stare at their watch as long as we are in the vicinity or buy something on the other end of the store, sliding sidelong glances at us and making sure to stay at least six feet away. That drives me NUTS.

    Sure, stare all you want. Go ahead! Everybody else is. But don't act like by being in wheelchairs my husband and son have some contagious disease and you might catch it if you make eye contact or stand too close.



  28. My mother was the same way, and so was I. Max is lucky to have you! xoxo

  29. First I just want to say that I've always said my son, Jailen who is in a wheelchair & has cerebral palsy, was born with 2 sets of set for him & one set for me! You've just got to be that way. Someone has to defend these kids & that's our responsibility as their parents. I completely understand "Connor's Mom"'s peeve too. The same happens to us. Jailen is very friendly & outgoing. He will literally say hello to anyone who comes within about 4 feet of him & there are times when we are absolutely avoided & ignored. I remember one time in a doctor's office waiting room Jailen said hello to this one woman I know 4 times with no response. I eventually said to him, loud enough for her to hear me, "Don't talk to that mean lady baby she doesn't wanna talk to anybody." That's ashame that people have to act that way as if cerebral palsy were contagious. Thanks for blogging, Ellen, I love reading it. I have the same exact feelings as you do on many many issues. Glad to know I'm not alone...although at the same time I hate to think how many people actually have to deal with the same struggles.

  30. Sometimes the staring bothers me and sometimes it doesn't. Usually it doesn't. Mostly I chalk it up to how totally cute, awesome, and adorable my girls are. People just can't take their eyes off of them. Occasionally Holland will ask, "why is that person looking at me?" And I will reply, "because she has never seen another kid as cute as you!"

    But mostly, I can't get too upset because Holland and Eden are the worst offenders. They are always staring at people, and I am the one telling THEM that it's not polite! Today in fact, Eden and I were at a ped urologist appt. There was a lady in the waiting area with really curly hair. Eden was staring at her enough that she couldn't drive her chair in a straight line! Then she say, loud enough for the lady to hear, "why does that lady have really curly hair???" The lady actually answered, and said "I was just born that way!" Then we had a big conversation about different kinds of hair. As we were leaving, the lady said to me, "she is the cutest little girl I've ever seen!"

    Why thank you! But she really does stare. And she's SO nosey.


Thanks for sharing!

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