stop staring!
Yesterday was the first day in a long while that the temp got up to 70 degrees. It was beautiful. Everyone was out and about! We loaded Ira up and took the fam to a local playground.
Everyone, and I do mean everyone, stared at Ira. People weren't even trying to hide their stares. But I get it. I stare too when I come across someone who isn't "like me" so I understand. It's just that I'm on the other side of things now and I want so badly to protect my son. I want so badly for him to be treated like any other two year old.
This is, of course, a parenting instinct. All parents, whether parents of kids who are "normal" or kids who aren't, want to protect their kids. In this, too, Laura and I will have to find a balance of stepping in when appropriate and letting Ira learn how to cope on his own.
I remember well when a therapist in the hospital sat me down and said, "Don't let Ira become a victim of his circumstances." My initial thought was, "Well look at all the stuff my sons hooked up to! He is a victim!" but now I understand what he was saying. It is imperative, for Ira's sake, that we go about the business of life in as normal a way that we can. Now if we can just clue in our fellow Brooklyn neighbors to do the same.
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Everyone, and I do mean everyone, stared at Ira. People weren't even trying to hide their stares. But I get it. I stare too when I come across someone who isn't "like me" so I understand. It's just that I'm on the other side of things now and I want so badly to protect my son. I want so badly for him to be treated like any other two year old.
This is, of course, a parenting instinct. All parents, whether parents of kids who are "normal" or kids who aren't, want to protect their kids. In this, too, Laura and I will have to find a balance of stepping in when appropriate and letting Ira learn how to cope on his own.
I remember well when a therapist in the hospital sat me down and said, "Don't let Ira become a victim of his circumstances." My initial thought was, "Well look at all the stuff my sons hooked up to! He is a victim!" but now I understand what he was saying. It is imperative, for Ira's sake, that we go about the business of life in as normal a way that we can. Now if we can just clue in our fellow Brooklyn neighbors to do the same.
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posted by jch at
10:29 AM
9 Comments:
Having grown up in a family with a very unique physical make-up (that changes periodically), I can identify a little bit with this part of your life. My siblings have ranged through every color of the skin rainbow and almost that many special abilities or situations, including for a brief time a brother with an electric blue safety helmet. Sometimes the staring is so awkward to handle because you can't know what the people are thinking.
My parents have handled this in a myriad of ways depending on the child and the circumstances. My father's preferred choice is humor--even going so far as to plant one of my sister's prosthetic legs in the center of a restaurant dinner table to make a point. You had to be there--it really was very funny. My mother tends to lean toward the education route. She loves to engage people and give them the opportunity to ask questions, because she strongly believes this helps the person deal with the next "different-looking" person in a better way.
Sometimes we've had children with special equipment, and we just let other kids ask and touch all that is appropriate so they could understand the needs of a potential new friend. Adults often want the same thing but feel socially awkward about prying. We've done this so much that my sister is a professional at telling her "story" very quickly so that people looking at her will stop making weird faces. Most of the time, there's a lot of ignoring that occurs. Most people just don't know how to react, and they don't need to be engaged in those situations. It takes a while, but you can learn to ignore it (or not even notice it). Your therapist is right on target, though. Don't let other people's reactions dictate how Ira lives, as long as he's safe and doing things he likes to do--being a victim and playing society's role of a victim are two different things.
Dana, thank you for these words. Really. Thank you.
I too have experienced this. My older sister is confined to a wheelchair and does not talk or walk and I remember being a kid asking my parents "why people always stared at us." I never looked at her any differently and could not understand why others did. I remember my middle sister and I wanting to make faces back at people for looking at my sister or saying, "take a picture it will last longer" but my mom was and is still an educator in the realm of children with disabilities so she either would "ignore" the behavior and go about our day or she would walk up to people and engage them and give them an outlet to ask questions to "educate" them on people with disabilties. I even remember being in the 3rd grade and a boy telling me "I was retarded like my sister" and came home bawling b.c they called Ivana "retarded" and I had never heard my parents use that word to describe her and my mom explaining to me that "mentally-retared" was the technical term for Ivana's disability. Ahh it crushed me b.c I saw Ivana for the fun, laughing, lovable,and peaceful being that she was and did not want her labeled. Now being an adult and my sister still living with my mom I am used to the "stares" when we go out or the "looks" if she is having a seizure. I now have a 2.5 year old who loves her Auntie Ivana and is amazed that she gets to ride in a "special" seat and when she sees other people riding in a wheelchair screaches, "they are riding just like Ivana." That is one of the great things about children is that they are innocent so explanation and modeling appropriate behavior can go a long way...I often read your blog and am amazed by you and your family's strength. Ira and Sophia are blessed to have such amazing and loving parents.
You know well, that I was adamant about treating John like he was a “normal” healthy boy, when he came home from the hospital. We told ourselves that we were not going to let this stop us from engaging John in child activities, like going to the park, walks or playgroups. I kept my promise. Two weeks after we brought John home I took him for a walk. Mind you, it was horrible but John got use to it and today’s he absolutely loves going for walks.
Eventually, I ventured further away from the house with him. I would take him everywhere with me, with or without a nurse. (Pulled a muscle in my back three times in 6 months) I hated the way people stared at John. Some days I would come home, tell Kevin about it and cry. I couldn’t understand how someone could look at MY child and give a funny look. Or how another parent could frantically pull their child away from my son when all they wanted to do was say hi to Johnny.
One day I stopped at the Walgreens by my house. As I walked through the store with Johnny three children rolled up to me on roller blades. Their ages ranged from 7-11. They started asking me questions about John. “Why does he have those tubes on him” “What happened to him” “Can he breathe” “Will he need this forever”. I literally got at least 20 questions from them. Finally, they started to roll away and the littlest boy rolled back to me and said, “I really hope your son is going to be ok”. It brought tears to my eyes and I thanked him. I wanted to hug him but I didn’t think it was appropriate. On my way out of the store I had to stand in line. The line was long, they were busy but I had time. I could hear behind me two adults saying, “Look at that woman with her baby”. I totally ignored them. Finally, one of the women walked up to the front of the line where I was standing, looked at John, looked at me and walked back to her place in line. I knew what she was doing because I heard her talking about us.
I experienced one end of the spectrum to the other in a matter of 30 minutes. I was so upset walking home that day. A perfectly good experience was ruined by a bad one. When I got home Kevin and I talked about this. I started ranting off things I would say to people if this happened again. Knowing I would never really say them. So we concluded, Kids stare because they are curious. They do not know any better and have absolutely no bad intentions when they do this. If anything, they just want to learn. Adults also stare because they are curious. They also do not know how to react to someone who isn’t “like me” as you put it. Kevin and I truly believe that when people stare they have no bad intentions, they just wonder why or what happened?
I guess I am sharing this with you because you are not alone. Do what you do best, be Ira’s #1 Dad (and Laura #1 mom) and don’t pay attention to the stares. Know in your hearts they are without bad intentions. Imagine them walking away, after staring, saying in their thoughts, “God Bless that Family”
you're getting excellent stories and advice from your friends. i'd just say "amen". especially to the examples of engaging with people. i think people want permission to ask about yours and ira's story. i would add that, when you share his story, there should be more to it than his struggle (i know you know this from the way you share his story with all of us). what i mean is that people, kids especially, should see that the ways they're different from ira pale in comparison to the ways they're the same.
I am looking at this from a different perspective, my children are the ones that ask questions when they see someone who is different then them. The other day we were at Target and we saw a dwarf walking with his regular sized wife and my oldest son was asking why that Daddy was so little, he was curious and not trying to be mean. I however did not know the correct thing to say, I did not want to offend anyone or ignore the situation. It was very difficult for me. I KNOW THIS IS EASIER SAID THEN DONE, but from this Mom's opinion if you hear someone asking about Ira, especially a child, I would maybe try and talk to the kid and let then know that Ira has a special machine to help him breath. Engage him in a little conversation and say Ira was happy to meet them. Maybe this way it can help that kid in the next 'different' situation or allow the parents to continue the talk when they get home.
I cannot imagine how you and Laura feel but know that many prayers are surrounding you guys always. God grant you peace!
And though I think you look nice with and without the beard, I prefer a clean shaven hubby. (maybe that's because my Air Force husband always has to be!)
Hi Joe - I was touched by this recent post. I work in community inclusion with people who are developmentally disabled and (mostly) have cerebral palsy and are in wheelchairs. That societal stare is everywhere, but it is usually only brief for us, and in any event I have grown immune to it over the years. I agree with barbara, who's own story was quite moving, that almost all people are without bad intentions when they do it. People, smart and not so smart, can be so insensitive sometimes, treating others like eye-candy. There are also, I've found, a surprising number of people who stare at everyone who looks at all different. What I've found is that even when people stare in an insensitive way, axe murderers will also hold open doors for us and jump out of the way of out-of-control wheelchairs without a complaint (most of my clients don't have very good eyesight either -- watch where you're going on 23rd street.) I myself will observe a family with a physically or mentally challenged child with interest, both because of where I work, and to see how they handle the normalcy that can be much more strenuous than my normalcy with my child. I am aware not to let them see me, though. I guess it might be similar to the way I used to check out beautiful women.
(yikes...Sorry for that)
My wife! and I are stared at everywhere we go, especially with our son, because I am white, she is black, and he is very light skinned sort of Yemeni-looking. I call it the triangulation effect. My son has even recognized it, he says, "they look at me -- then mommy -- then daddy -- then me -- then mommy -- then daddy again!"
It's not a comparable situation, not by a long shot, but I think that "the stare" can be overcome. I think little little kids don't feel the weight of it like grown-ups.
I would never even think to give you advice on this, but I think that erring on the side of "stepping in" and calling out insensitive adults (not kids) when they act even mildly evil is not just reasonable but righteous and loving toward your #1 neighbor, the fam.
I think that if I were in your shoes and did not know the Lord at all, I would take it too far and end up getting into dad-fights, which are both the most exciting and most horrible things on the playground.
I bet you don't stare when you come across someone who isn't like you in the same way other people do. You have a conscience and an understanding that you have a Father watching what you do.
People stink, sometimes, and some people stink all the time. I think that you have the right to insist that they at least burden you with their stinkiness and not your son. It will ferment in their brains and at least plant a seed of understanding when they've gone too far; and make them question why they were walking down that insensitive path in the first place.
This isn't really the same as you're experiencing, but it might be of some help. I'm a really scrawny woman (size 0) and I've been known to carry my almost four year old who is the size of a normal five year old in an Asian carrier on my back while carrying my 1.5 year old in my arms. It usually only happens when the older child gets too tired on a long walk.
I've had people driving by slow to a crawl and literally hang out of their windows staring at me. It would sometimes get on my nerves. Nobody wants to be stared at like they are a freak show. Then one day a guy who drove by staring turned around, came back, and offered to help buy me a car. It was kind of funny and made me realize that at least some of the people want to help and that I shouldn't assume bad motives.
So what I do now if someone stares at me for any reason is to smile and wave. They either realize that they are being rude and stop or they have that opening that they need to start asking questions.
i don't have kids, but i think if i did i'd want to teach them something i decided for myself. this is over-simplistic, but i believe that we can't know people's intentions, but we can decide what we're going to assume in our own minds. in this example, maybe people's stares come out of curiosity and maybe they come out of narrow-mindedness, but if it makes me feel better to assume that people stare out of curiosity, then i'm going to try to assume that every time because i want to live graciously towards others, and because it makes me feel better. i can see how someone might see this philosophy as being from the school of rose-colored glasses, but i know the truth about how people are, and at the end of the day the truth is that i can't know people's intentions.
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