Over the weekend, my mom and I got to talking about the bungalow colony we used to go to. A bungalow colony, in case you've never heard of it, is a cluster of cottages, along with a clubhouse and a swimming pool, on a big plot of land. There used to be a ton of them in the Catskill Mountain Region of New York, and my family rented a cottage at one for the first 14 summers of my life. It's kind of like the setting of Dirty Dancing, but without anything dirty or much dancing (other than disco).
Anyway, my mother mentioned this kid, Adam, who'd occasionally come to visit his grandma at the bungalow colony. He was what we called "slow" back then. And suddenly, I had tears running down my face. I hadn't thought about Adam since I was little, but I realized, with horror, that I and some other kids used to call him retarded when our parents were out of earshot. "Retard! Retard!" we'd chant. Adam would whine "I am not a retard!" and run to his grandma, who'd give us the evil eye.
Now that I have a child with cognitive impairment (who, unlike Adam, cannot talk to defend himself), it pains me to think of how Adam felt when we teased him. It gets to me whenever kids say stuff about Max, even though Max doesn't notice.
I've been haunted by Adam's face these last few days.
Adam is the only kid I knew, growing up, who had disabilities. It's weird, but when I've tried to remember how I used to react to kids with disabilities before I had Max—kids I may have seen out in the mall or elsewhere in public—nothing comes to mind. Nothing. Perhaps I've blocked out the memories because it's still hard to accept, on some level, that I now have a child with special needs.
What memories do you have of kids with disabilities and how you responded to them?
Photo by K. Guerrette
I think we all make fun of some one at some point in our lives... You where only a child, and children emulate what is around them... You can't blame your self... We have a mentally retarded cousin in our family... He never visited much, but we never made fun of him, but as a child I'd always ask questions.
ReplyDeleteIn my days in school there where not many handicapped kids in school... Though there was the special needs classroom with about 8 mentally or physically challenged kids. It was our job, every week or so to visit, and help them with computer lessons, and be a buddy.
I don't despise children who are curious. I despise the parents who don't educate them to be kind to others, and mock along side there children.
If I seen you and Max in a store, would I stare? Likely so... If I'd walk up and ask nicely what was wrong, would you educate me, or be mad because I asked? - That is the question...
I agree with Rich. Don't beat yourself up. All of us do that in some fashion even when we simply leave someone out of a group, as children. Even if it's something smaller, or less obvious, like making fun of someone who seems a little socially "off." Not many people stop to think that, that person might have a learning disability but look perfectly "normal" on the outside. Basically, we all have something that makes us a little different. Everyone has a disability. You are such a great mom and advocate, and the fact that you've remembered that incident from your past only makes you even greater! And all the wiser. Your stories provide so much help to so many.
ReplyDelete~Marianne
My mom is a nurse. When I was little she worked as a hospice nurse part time and a nurse in a nursing home part time as well.
ReplyDeleteMy daddy often brought me in to see mom at her various jobs and several times they took me on hospice calls in the evenings.
My daddy only worked part time at the time and so when I wasn't home with him, I was with my grandmother so I didn't have ANY normal abled friends. Everyone I knew was disabled. Either by age, or illness, or brain trama.
So when I started school I naturally loved the children in special ed. Several stick out in my mind as school went on but the child that stuck out the most was Joey.
His mother accidently backed her car over him when she thought her husband had him one day when he was two years old, and Joey, his brain damage kept him with the mentality of someone perhaps four our five all through highschool. He had mobility problems and walked with two crutches that clapsed to his arms.
Kids were so mean to him, one kid had more fun dumping his school books on the floor knowing very well Joey would not be able to easily pick them up. Chad was a real pill and after day after day of watching him do that to Joey I threw the contents of chads locker on the floor.
I got in trouble of course but believe it or not Chad is now a cop in our small town. I ran into him a few months ago and he thanked me for doing that. Really.
Anyway, I like you have a eagle eye for people with disabilities and do my best to go out of my way to help them.
Growing up my neighbor had cerebral palsy and also some degree of mental retardation. Mary lived with her parents and I am "guess"-timating was in her 20's. During the time my mom had me, a bunch of other neigborhood woman had babies. They would all sit outside with us in our strollers. Mary did not want to be left out so she started coming outside with her cabbage patch kids. Welllll....as we grew, the dolls did too, complete with birthday parties that all us neighborhood kids went to. Kind of silly, kind of heartwarming, also kind of weird- but to me, Mary and her dolls were "normal". We even have a picture w/my dad holding one of Mary's "babies", lol. So this was my first taste of someone w/ special needs.
ReplyDeleteWhen I was in grad school I worked as an intern at a residential tx facility for children w/a varying degree of mental retardation from various causes. I LOVED it, was so in my element. When Noah was born and the doctors were talking to me about a variety of genetic issues and/or hypoxia that could have caused his injury all I kept thinking was fuck, I am such a hypocrite b/c while I loved working w/those kids, the thought of that being my own child tore me up.
Today I still sometimes "stare" at kids w/special needs, but mostly I stare at their parents. I am intrigued- how do they do it? How do they cope? I am drawn in somehow, wanting to know more, wanting to know their story.
I had a brother with a physical handicap so I got the lesson about kindness and differences and helping and understanding early on in the home. I would have been your worst nightmare, Ellen, if I had been Adam's sister, because I spent the best part of my public school years beating the living s#!t out of anyone who made fun of my brother. It only took ONE comment, and I was at 'em!! And God help anyone who made fun of him on a rainy day when I was carrying an umbrella because I wouldn't hesitate to use the thing like a baseball bat!!! I took a few punches myself, I didn't always win, but I never failed to inflict at least some damage and if I went down, I went down swinging!!!
ReplyDeleteI also had the tacit approval of the school adminstration when I'd take someone down, because I was a polite and well-behaved student otherwise. I'd get sent to the principal and he would ask "Why'd you beat up that boy, Felicia?" and I'd tell him he was was making fun of my brother, and he'd say "Now don't do that again." Of course, it would be lather, rinse, repeat in a week or a month!! I never got detention, though the kids that were making fun did. I also stepped in to defend other disabled kids at school every now and again, and by the time I was in my last two years of high school, all I had to do was glare and the bullies would fall away.
I didn't have a lot of friends in high school (the fact that I would beat people up might have affected my ability to socialize, but I also think that people didn't want to hang around with my brother, and we were a package deal). Kids in school are often cruel, I guess it is a rite of passage or something, but it didn't bother me too much, because we had a big family and lots of work to do at home, so my friends were (and still are) my family!
I love your blog, it makes me remember things I've let drift away in my past!
In elementary school, I would help out in the special ed temp. trailer. I also remember making fun of short buses and doing all of the lame "retard" jokes, etc. etc.. I never really "knew" anyone with a disability, though, not until Darsie was born.
ReplyDeleteGrowing up, my mother was a specialist at a boarding school for children with special needs. She made sure to bring me from a very young age to work with her often so that I could get to know her kids. She really worked hard to make sure that I saw them as people, first and foremost, and not just their disabilities. Still, like many kids, I was sometimes afraid of them when I was very young. Coincidentally enough, there was a boy with severe hemi who scared the living daylights out of me. The way he walked by completely dragging his leg and the way his right hand just fell completely limp at his side was terrifying to me. And here I am now, the mother of a child with a degree of hemi - it's interesting where life takes you, isn't it?
ReplyDeleteHi there.
ReplyDeleteI'm a new reader to your blog.
My son was born at 28 weeks and has been very lucky not thave all the problems most preemies have. Other then some respirtory issues then and now, and feeding issues he is well. I don't consider him handicap but he does recieve SSI.
Growing up I had/have a wonderful mom who told me not to be mean to other kids that may not "look normal as me". I didn't. I always tried to be friends with those kids from grade school through highschool, and now as a mom.
It saddens me that there are such cruel ppl out there, but God loves our children and thats all that matters, and us of course.
Hope you visit my blogs.
Ellen, I'm sure alot of us look back to when we were kids and feel shameful for how we treated someone with a disability. I know I do. Was I extremely mean? I don't think so, but I certainly said some things that weren't very nice.
ReplyDeleteUnfortunately, not everyone grew up and STOPPED saying those kinds of things. Would you believe that I had to pull a co-worker aside last year and ask him to stop using handicapped references as humour? (i.e. Did you take the short bus to school?) Having said hurtful things as a child is one thing, but to not know better as an adult is entirely another.
I think it's amazing that you had the courage to write this post. Thanks for reminding all of us about the importance of tolerance and kindness.
We all did things as kids that we're ashamed of now. You aren't the same person you were as a child.
ReplyDeleteMy dad is a minister and has always been very easy and comfortable around the very old or handicapped. Me? Not so much. Even now, I don't know how he does it - and I have a special needs child! I guess now I'm much more likely to try to start a conversation but before Emmett, I'd just look away. I thought looking away was the polite thing to do.
The only memory I have of children with disabilities is from high school. You know, you always had the special ed classes. And, I can remember when classes would let out, once the kids in the special ed classes would come out, other students would start making fun of them. I can remember feeling sad for them and not understanding why kids are so mean. I still don't understand why kids are so mean.
ReplyDeleteI was teased a lot when I was in grade school and junior high because I was overweight. So, I never dared to make fun of anyone.
In high school, I would always make it a point to talk to the kids in the special ed class because I wanted them to know that not everyone would make fun of them!
I hope that Max never has to endure any of that!
My only really strong memory is of a girl with multiple visible birth defects being at my sleep-away Girl Scouts camp one summer for a week. I don't remember much about her, and I'm sure I avoided her. In much the same way people already avoid my kid. I wish I could rewind and make a friend with her, and appreciate how cool it was for her to get to be at our camp.
ReplyDeleteI'm not sure I ever actively made fun of anyone with special needs, but I was the silent bystander, which is just as bad.
Now I feel bad also!! I made fun of him too. I think he was just a little slow, not really retarded. Don't feel guilty - that's how kids are - they can be very cruel. I will try to get over it if you promise to get over it also. I remember there was one girl at school that everyone made fun of and there really wasn't anything wrong with her. I guess she was just the poor unlucky kid that everyone decided to pick on. There was one girl who always defended her, but one day, totally by accident, the "defender" slammed the other girl's hand in the classroom door and some of her fingers were injured. Everyone felt really bad. I have also been the one picked on and I can tell you that it doesn't make you feel very good.
ReplyDeleteSuch great feedback here. I know that I was just a kid back then, but I still suddenly felt such pain for poor Adam. It's partly about "projecting," what a shrink might call it—I'm imagining how Max might feel someday if kids make fun of him.
ReplyDeleteSeems like a lot of us share the similar habit of staring at the parents of kids with disabilities and seeing how they're coping. We have an unspoken bond, don't we?
Rich, if you came up to me in a store and asked what was going on with Max, I'd tell you, no problem, and educate you about the fact that kids can have strokes. I've always been very open about that, I want to raise awareness and ease fears about kids with disabilities.
Felicia, yes, I am so glad you were not around to kick my butt! But I sure would have deserved it! I can see Sabrina being the same way about Max, she is fiercely protective of him. When she's not trying to kick his butt herself at home. And he kicks her butt right back!
Back when I was growing up in the 50s and early 60s, most kids with disabilities were hidden away. I remember only one girl with a disability in my elementary: she'd had polio and walked with cumbersome full leg metal braces and crutches and was expected to manage the stairs in an old two story building. I remember being very curious and wanting to talk to her, but she was several years older than I was, so I never really had the chance.
ReplyDeleteFor some reason, I was a very sensitive soul as a child, and couldn't stand it when people made fun of others, even when even the person being teased was going along with the joke. I remember that I did make a cutting remark about an overweight girl in my class on the playground, and my teacher, overhearing, got after me. It made a big impression.
I guess the person who most influenced my attitude towards folks with handicaps was my high school German teacher. She had MS and by the time I was in her class, she walked shakily with two canes and eventually used a wheelchair. She was an amazing, brillian woman, who taught physics, German, and geometry, plus she sponsored several student clubs that met at her house. My friends and I went over for meetings frequently, and then we just started going over to hang out. We loved and respected her, and we learned a lot about living with a disability.
I didn't really meet any kids with special needs until I was in high school. The elementary school I went to was not a big fan of inclusion, apparently. When I was in high school, however, I met and briefly dated a guy named Brian.
ReplyDeleteBrian was a year younger than me. He had red hair, freckles, a cute smile, a wicked sense of humor, and muscular dystrophy. When I met him at 16 he was in an electric wheelchair. We went on a date or two-- I remember going to a movie theater and we'd each bought the other a ticket accidently, so we gifted the extras to a surprised couple standing in line.
Our relationship didn't really progress past the holding hands stage, and I left for college shortly thereafter. I was a sophomore in college when he passed away.
I still have a Valentine's day card from him tucked away in the bottom of a box of keepsakes.
This is the horrible part-- I really think that a big part of the reason why our relationship fizzled is that I got made fun of for dating him. It was petty and shallow of me to care what anyone else thought, but I did and so I stopped calling him and he died two years later. The worst part is that I was his first and last girlfriend, so he never had the chance to meet someone who would have made him happy. He deserved better.
~Jess
I have always been the odd one out in my classes (I don't have any disabilities, but I do have Tourettes and Aspergers) and I haven't had much contact with disabled people, but I always made friends with the other odd ones in whatever class I was in, and have always believed in being kind to everyone.
ReplyDeleteI often feel very lucky at how healthy my immediate family is, because a lot of disabilities do run in our family (MS, downs syndrome, huntintons (sp?), etc), and I worry a little about what will happen when I have kids, but hopefully if they do have a disability I will be surrounded by caring people like all of you!
Now that you mention it, yes. I remember there being a kid in my early grade school classes. He was a "special ed" kid. He would only be in our classes part of the day then he would be gone. I can now interpret his helper as a para and I suppose he was being "integrated" part of each day with the "regular" kids. I was never very nice to him, very few were. Even in late grade school and into junior high I realized what it meant that he was there, that he was just a kid trying to get through the day. We came around and he became a "buddy" to most of us. There were still some mean kids, there always are. But he graduated with us (he was 2 years older) and received a standing ovation from the student body as he walked across the stage. I'd like to think his school career ended much better than it began.
ReplyDeleteI had very little experience with kids with disabilities growing up. One of the first things I asked after Bennett's diagnosis was what happens to kids with disabilities when it comes time to go to school. I went to school before classes were integrated.
ReplyDeleteHaving said that, there were kids in high school with a variety of disabilities. And although I don't remember being mean to any of them I certainly don't remember being nice either.
What scares me a little - and your commenters reinforced this a bit for me - is that I was a good kid - it sounds like you and everyone commenting were also good kids. However, even good kids do bad stuff sometimes - stuff that hurts other people. I think that's why I'm worried for Bennett. But as people who commented on my post said, all we can do is love our kids and make them feel as safe and confident as possible and hope that's enough to get them through. It also wouldn't hurt if we all had a sister like Felicia - how I loved her story!!!
I have been thinking about my perspective as a kid too. There were no kids with disabilities around. None! They were all shipped off to other schools.
ReplyDeleteI have to say that I think the kids in my neighborhood are very lucky to know my son. They will have the chance to learn acceptance and empathy at a young age.
Oh this brings up so many memories. I was one of those kids who went along with the crowd and made fun of "different" children. I even had a good childhood friend who had a slight deformity who I played with but when in high school, it wasn't cool to be around her. I shunned her as much as possible and to this day she will not speak to me.
ReplyDeleteOh, the things we wish we could take back!!
I am glad you would speak to those of us who are bystanders who "care" and would be brave enough to say hello and ask about your son.
Alyzabeth's Mommy for FIVE Months!
I work on a college campus and see students who have a "typical" CP gait and always wonder, is that what my daughter will be like when she older (she is 17 months)? Everytime I hear someone say "that's so retarded!" it is like a dagger to my heart. I never made fun of differently abled people, my aunt is a little person so I was aware of disability early on, but I do indeed mourn the loss of my "normal" child, and for that I feel great guilt.
ReplyDelete