Comments on: A Matter of Etiquette

By: joan jones

joan jones — Sat, 20 Dec 2008 14:57:38 +0000

My daughter Hannah Grace gets a lot of attention from other people. I am thankful for the people that do ask about her and speak to her. It’s the ones who don’t ask questions that worry me…she uses a vent most of the time and we have it attached on the top of her wheelchair so it is overloaded. She is tiny for her age, 35lb and 40″ tall and is 13yo! I have learned from having her to ask other parents if I can say hi to them. It helps me a lot and I give them a business card with hannah’s diagnosis and caring bridge page so they can learn more about her.
Hannah is deaf/blind and developmentally only about 3 or 4 months but it still means a lot to me when people comment to her or say hi to her. I usually just tell them that she is sleepy if she doesn’t respond.
I always try to explain things to other kids and keep toys on her chair for them to look at (she doesn’t care) I want kids to be comfortable with others with disabilities especially kids!
joan

By: Laura

Laura — Sat, 20 Dec 2008 05:40:40 +0000

Funny you should bring this up. I have just been talking this over with our family. So this is gonna be long……..

My children and I are so excited when we see another child with DS – there is some feeling of comraderie that surfaces though we don’t know that person at all.
I usually look for an opportunity to speak to the parent. I HAVE grappled with the thought of WHAT to say though….Sometimes it may appear to US that a child has DS, but I hesitate to come right out and ask or assume since I don’t want to offend the parent if it isn’t the case. HOWEVER, having said that, I also struggle with that societal truth (that they may be offended) since WE don’t look on DS as a negative anyway! – just a difference. I have thought of asking if they have an extra special child too or something to that effect…but since I have 3 other children, I don’t want them to always hear me referring to #4 as “special” which coud be interpreted in their little minds as more special than they. SO I love what Casey (above) suggested to say.

Our daughter doesn’t look very “Downs” much of the time and so far in her short life of 2 years, there have been VERY few outside our close-knit circle that have picked up on it. When they find out, most say they had no idea. So I don’t usually have people approach me, but I’d welcome it if they did!

On another side of it: we often get comments about how cute she is, or how funny, or pretty, or smart, or whatever the situation…In these instances, I want to just tell that person that SHE HAS DS because I think it might help to dispell SOME of the negative associations that accompanies their thoughts of having a child with a “disability.” If they can see how “normal” she is – which they have just been observing – they might reconsider their assumptions. I usually don’t go into it though because of time, but that is my heart’s wish.

And lastly…the normal response to any other person you pass by would be to smile and say hi. But I have observed that many people that are “different” get ignored because people don’t want to look, or stare, or draw attention to their disability or difference. Unfortunately, that means a whole lot less people are saying hi and smiling at these dear people. And a lot of them are being treated as if they are invisible! So we try to be very mindful of that and make it a point to speak with them when they come across our path. I hope it makes a difference in their day.

By: starrlife

starrlife — Sat, 20 Dec 2008 04:30:08 +0000

It’s not a one size fits all thing. I strive to sense what is comfortable and at least say hi. I don’t mind, kind of like it when people say hi to my daughter, unless they are kind of weird about it. Better than staring. Kindness is accepted by all from me!

By: Julie

Julie — Fri, 19 Dec 2008 12:26:33 +0000

Just a story here… We were at story time at the library and really struggling through it. My son (5, Autism) really didn’t want to sit there. The child next to us started asking questions right out loud and I had no idea what to say to her and was trying so hard to keep my cool just dealing with my son. I heard the woman next to us quietly whisper, “He’s like (insert boy’s name)”. That shut the child up and she sat quietly watching my son once in awhile. I wanted to cry with relief. Maybe that wasn’t politically correct or something, but it worked and I was happy for it.

By: Trish

Trish — Fri, 19 Dec 2008 05:18:15 +0000

I would probably say hi and ask how old she is and then tell her she is beautiful (just the same as I would to anyone else, which is sort of the point). I think many times people just avoid even the typical questions because they feel awkward.

By: Casey

Casey — Thu, 18 Dec 2008 20:05:42 +0000

I wouldn’t necessarily say anything about the child’s disability unless it seemed like the mom was open to visiting. I would possibly say something like, “You have such a beautiful little girl. She must be such a joy.” Then, if she opens the door, you can share.

By: rickismom

rickismom — Thu, 18 Dec 2008 16:59:57 +0000

I certainly wouldn’t mind. Ricki might growl, though. So hesitate if it is an older child (teen) in hearing range,. I would say something like “Your daughter is lovely. Since I also have a child with DS, it is a pleasure for me to see how nice your daughter is.” (But be perpered if by chance the child does not have DS, to get wacked on the head!)

By: Christine

Christine — Thu, 18 Dec 2008 16:06:37 +0000

I know that I am a rare breed, but I welcome it wholeheartedly. Regan does too. She loves it when people come up and ask about her walker or what is wrong with her legs. She will let anyone test drive her walker for themsleves, she has asked me to remove her AFO’s to let other kids try them on. We havel always enjoyed sharing and spreading the joy of her God Given talent. It is her personal way of being able to share. I usually talk about her wonderful doctors, therapy opportunities available, where to find the best disablity summer camps, etc. It is not the norm we have found out, but it is already part of our personalities to be open and welcoming.

By: Barbara

Barbara — Thu, 18 Dec 2008 15:43:50 +0000

I hope parents will be more understanding of the wide variety of responses people make in public to their children with differences. Everyone is doing as well as they can. Even Kim struggles with what to do, or not.

By: Awesome Mom

Awesome Mom — Thu, 18 Dec 2008 14:52:46 +0000

I have been in similar situations and usually end up just smiling at the child and moving on.