My daughter is four. I don't mind people wanting to take a good look. I understand that. When it crosses beyond that line, I become irritated.
The worst offenders are the sad, pitious-smiling "sympathizers" who don't even know us. The other group is those who stare in total disgust because I don't keep my daughter cloistered at home. The latter is usually a foreigner who has not yet adapted to American culture. I do understand and forgive but it is not acceptable to continue that way.
Both of these situations are rare because I am lucky to live in a city where people overall are very comfortable with disability and just say hi. Disabled persons are visible. They are part of the workforce and community. My daughter's disability is noticed but it is mostly a non-issue here.
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When Sarah was born in England in 1976, there was still a pretty negative outlook on children with Down Syndrome.
We hoped she would walk, talk, maybe be able to take a bus alone. We spent hours snd hours helping her learn to read, write, use a knife and firk, things most people take for granted.
Never in our wildest dreams did we imsgine she would become the strong and amazing woman she has become: stage , TV and radio actor, Mencap Ambassador.
Take a look and see:
Sarah Gordy
https://www.facebook.com/sarahgordyactor/
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My brother in law will be 49 this week. He lives with his 88 year old mother nearby. With a lot of support from my wife, we have been able to keep them both together. He and I have our trips to church and McDonalds on the weekends. This weekend we will visit the bakery and pick out his birthday cake. He loves movies with the Back to the Future trilogy being his favorites. He goes to a program 2 days a week to provide additional social interaction. Twice a month he attends a social event with other older (over 25 generally) special needs folks. They may have a dance, do crafts, have a Halloween costume contest, or play bingo. Yes, people do stare at him and us when we are out. We both smile and wish them a good day.
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I don't stare but I watch and smile with fondness. Having worked extensively with that population I have a soft spot for them and all the differences that make them so special.
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Your Sophie is beautiful xo
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As a parent of a teenage boy with Down syndrome, I understand the staring. From both sides. There used to be a gentleman with DS who worked in our local grocery store, in the deli. I'd stand back for while, watch him helping customers, doing the math, keeping track of everything in the busiest department of the store and think "maybe my son will be able to have a meaningful job like that someday." My son also has apraxia and uses a communication device and that is hard sometimes to use in public -- people just look and see a spoiled kid who can't put his iPad down, or they sit in the restaurant booth behind us and think he's being annoying when they hear the computerized voice, when really he's just talking. So we go a lot of places because I want him to be able to function out in the world, I want him to be comfortable out in the community - and I want the community to be comfortable with HIM. He's not strange or scary or weird. He's just a kid that loves Disney and has a collection of hats and wants to be friends. And he's using the technology out in the world to help him navigate. So if you see us out and about and you have questions, ask! If you're kids have questions, help them ask! We're educating, we're advocating, but most of all we just want to be friends.
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I just love your comment. Kudos to you for encouraging him to navigate this crazy world as independently as possible. Having worked with the DS population for many years, I have no doubt your effort and confidence in him will pay off.
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My son has autism, and while it isn’t apparent in his appearance at all, it usually is in certain behaviors he exhibits, such as a slightly awkward gait, a louder or oddly modulated voice, or an anxious behavior. When he was younger, I was often quite annoyed if I noticed people staring at him. Over the years, I realized in most cases they are trying to “make the unknown known” or that they may know someone with autism who behaves similarly and they “see” that person in my son. On very rare occasions when it has gone on too long or seemed unkind, I’ve tried to either leave the situation or use it as a moment to educate others. I love the idea of more people with different abilities being out in public (it does still seem quite rare), firstly so they can have more “regular” experiences, and secondly so that stares become a thing of the past and are better-integrated into our society.
16
Staring has many meanings, which your article well illustrated. My brother (with Down Syndrome) was three years older than I and we spent many afternoons on the playground with other children staring at him. Although I was a mild mannered child, these stares and whispers angered and frustrated me. As an adult now, and a mother, and with my brother having died peacefully in his 20s, I find I stare and smile at families with Down Syndrome children. My stares are are filled with the memories of my brother and a yearning to reach out to these folks and share my own family's story (I never do share). While your article has me questioning myself, I would hope that my staring is never seen as an intrusion or judgment, but a nod of encouragement and a whispered prayer for their child.
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What a moving and wise article!
13
Beautiful rendered story! I find myself doing the same, and experiencing the same. My son with Down syndrome is 9. Thank you for writing this.
23
What a beautiful story.
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