If your child has a visible difference/equipment...

Soapstone

Do you prefer if people ask about it, or not? 

A friend recently told me that she dreaded taking her son out when he had his helmet for plagiocephaly because some kid would invariable ask about it. She said it really upset her when people stared or asked questions. She was also pleased when parents were "properly mortified" when their children asked.

On the other hand, I prefer that parents let there children ask about Amelie's CIs. I hate when parents ignore their kids when they ask or tell them to be quiet. Amelie's too young to understand right now, but she won't be soon and I don't want her (or her peers) to think it's something to be embarrassed by or ashamed of. I also want to model a good response for her.

ToastieSimons

I prefer it.  I'd love to teach people about equipment. I don't think people should be mortified for their child asking.  kids are inquisitive. they want to know why someone has red hair when everyone in their family had brown haur or why a kid needs a wheelchair, etc.

MaxandRuby

It took me awhile to get to a place where I wasn't bothered by talking about my son's CP. Now, 2yr post diagnosis, I would MUCH rather someone (adult or child) ask about DS2 then stare and think I don't notice that they are staring. I am incredibly sensitive to the looks we get when DS2 is using his walker (and soon to be wheelchair) so being asked about him takes at least some of my insecurity and anxiety away. I will never ever forget how I felt when my little family of 4 (DH, me, and my 2 boys) went to an office picnic type of function. It was the first time I brought DS2's walker out in public. Not 1 single person talked to him or me when I was with him (yet there were many looks) and only 1 child played with him. I was anxious (wondering how people would react/what they would think), near tears most of the time (because of how DS2 was ignored but stared at), and got the hell out of there as fast as I could. It actually pissed me off that no one even bothered to say hi or even come up and do the superficial small talk. BTW - at a separate event a couple of months later I thanked the mom of the child who actually played with DS2 and told her that she had a wonderful son.

Sorry - I went on a little vent there. I guess ultimately I would say that yes I prefer to be asked questions but that it can take people awhile to get to that point...if they ever do.

malcivar

I'm not in your position but a co-worker of mine is friends with me on FB and he updated his cover picture to something very sweet so I started looking at some of his albums and noticed that in several pictures his son wore a helmet so one day in the company kitchen, I commented on how sweet his profile picture was and then asked if he wouldn't mind me asking why his son wore a helmet.  He was very open about his son having CP and beamed when talking about him. 

I think for people that aren't in our situations, asking that question seems rude maybe or they're afraid of making the parent uncomfortable when a lot of times it's just the opposite.  I think kids, especially little ones, don't have those preconceptions and will just ask which opens up the opportunity to explain why the person needs the equipment and that it's not a 'bad' thing.  It just is.  

Rose.9.6.03

My DD has skin and hair abnormalities.  Honestly, there are days when I don't mind questions at all and there are others where it drives me batty.  

I never, ever mind if a kid asks sincerely.  Myself (and sometimes DD) will explain.

Most of the time, I don't mind when an adult asks sincerely.  But sometimes they want to get too personal and/or expect me to go into a long conversation about genetic testing - and I just want to get my shopping done.    I don't know when the last time was that I went out with DD and didn't get at least one comment or question.  Also, there are many times when people have been rude (both knowingly and unknowingly) - particularly about her hair (she has woolly nevus that gives her about half tight kinky curly hair and half straight hair).  I've actually had adults ask "did you put your finger in a light socket?," tell DD that she's going to "hate her hair when you get older," and  say to her twin sister that she "got the good hair."  Grrr.  

 Even when the comments are totally benign or meant to be a compliment (she gets a lot of "your hair is SO COOL!") it just constantly draws attention to the fact that she is "different."   Thankfully, DD loves her hair and is comfortable with her skin.  She's an awesome little girl!

 

goldenleaves

I LOVE when people ask. I love when people ask if Lauren has Down syndrome! I also love when people asked/ask about the kids' helmets. Ryan wore his plagio helmet for 6 months and Lauren just got hers today. Even commenting "Your son/daughter is so cute!" is way better than just staring.

JoJoGee

Lily has CP, glasses and a trach.  So, we get stares wherever we go, but we don't get a lot of questions about her medical issues.  Most often then not, people comment on how cute she is.  It could be that Lily is still a baby - and it's easy to love a baby. Or, it could be that Lily is very expressive and interactive.  Or both!

When we do get questions, we are very open about her diagnosis.  Lily is who she is - to be upset by people's comments, or to hide her from the world, would do nothing but teach Lily that she should be ashamed of who she is.  In addition, that kind of shameful behavior only teaches others that people with disabilities are sub-human, or something to be feared.

In particular, I love it when children ask about Lily's differences.  Many parents are mortified by this, but I take it as an opportunity to teach other children that differences and disabilities are okay.  Children are naturally curious and, often, do not have a pre-concieved notion of disability.  When I frame disability in the context of "we are all different in some way," the children are very understanding and accepting - and sometimes other parent's learn a vital lesson too.

adge1119

i would much prefer people to ask about it.  i actually wish i could just have a big sign that says "yes, he has special needs" rather than people staring.  most people assume he is younger than he is and when they ask his age and get 3, mostly they are dumbfounded and feel awkward.  i usually throw in that he has special needs so that their isn't that awkwardness.  when he had his helmet i got special vinyl stickers made for it.  i feel like the more attention i can bring that we are comfortable with it so should other people feel comfortable.  he is one of 46 kids with his diagnosis and i am getting a shirt made that says "1 of 46 and awesome!"

RevivingOphelia

I preferred they ask when Nate was having to wear his helmet after his cranio surgery. People were pretty clueless. When we were asked they often thought it was because of epilepsy. I'd rather teach them about this condition. 

No one ever asked about Nathan's forehead before his surgery. I guess his wasn't so bad. But, if it was, I would have wanted them to ask about it. Especially kids. Kids are just curious, and want to know. Nothing wrong with that.

navybride06

I stop in here every so often....  I like this post:)

My son has a smaller hand. He has 2 fingers that are fused together and 2 that were webbed, we separated those already, the fused ones (I don't think ever will).

I have seen many people stare.  If they do I usually tell my son to say hi. Puts them on the spot.  Kids are cuter or funnier.. I have had kids (5 and under) say-

"Super finger, easier to scoop ice cream"

" don't worry I have scissors"

"Jack is awesome he has double fingers"  

My son is 2 and so doesn't "know yet" I proudly explain his condition, my DH is more sensitive.

I did have fun when he had a full arm cast 2 times after surgery at 6 months and 1 year when people would stare and ask what happened.  Dropped down stairs, rolled off car roof, twisting, and other funny scenarios.  

janecanadian

I would much prefer if people asked, especially if they have kids with them.  DD wears afo's and is starting to use a wheelchair.  Soon she will be using kafo's and a walker.  Sometimes when other kids see her they say, look it's a little girl in a wheelchair, and then the parents try and shut them up like they're embarrased.  I would rather the parent acknowledged what the kid said and then asked us about it.  I think this sets a much better example for kids.  Easier said than done though.  There have been so many times when I have wanted to talk to adults, or parents of children who are using a wheelchair or other equipment like Maddi will use but I'm too shy and afraid to say the wrong thing..go figure!