Comfort Level

[Jess&Madi]

So, just wondering if any other moms share this ... My hubby seems way more comfortable with my daughter than I do. For example, whenever she meets someone new he is quick to show them her shunt & even her scar (to family). I, on the other hand, prefer to keep it covered up with a hat. I am not ashamed at all, I just don't want to draw attention to her differences. People can figure it out for themselves. Although, I do like to warn people ahead of time about her shunt when they're holding her. Anyways, just wondering if anyone feels uncomfortable. Is it just me?

[LysetteOlmeda]

Hi friend! Im not shy at all about the fact that Lyla has spina bifida but Ill admit that I always cover her feet up in the stroller so people dont see those big clunky corrective shoes! It sounds horrible even as I write it, but I guess I dont want any questions. Obviously some people can be rude about things and I dont wanna have to hurt somebody! LOL Just kidding But I guess its natural, we dont want to have to explain our childrens problems, its like your just constantly repeating yourself.

[Dodger67]

I'm chipping in here with a "victim's" point of view.

I used to absolutely HATE!HATE!HATE! my parents telling other people stuff about me that is none of their business. I was probably about 8 years old when it started bothering me but it took a few years for me to make it absolutely clear to them that they were not allowed to discuss my private stuff with people who do not need to know. As an adult its still strictly "need to know". The only people outsdide of my immediate family that know the gory details of my condition are medical professionals.
Even school teachers only knew enough to understand that I was allowed to go to the bathroom at any time, what I did there was none of their business.
Come to think of it - the members of this forum are the only "outsiders" with privileged access to my information.

[cadon's mum]

My husband also is first to jump in with the SB thing, I on the other hand don't feel that i need to have to tell every Tom, Dick or Harry about my son's condition. The only time i ever felt the need to explain was when he got his first shunt and people started staring at me when my son had an enormous bandage on his head at 4 weeks old. I soon got sick of that and just started saying " what do you think i did drop him down the stairs?" As far as i'm concerned i just want people to treat my son the same as they treat my other children, i do not want people to look at him and say "that's the kid with SB". I need Cadon to have confidence in himself and be comfortable with who he is he is only going to get that if he is treated the same as any other child.

[kali]

I have never liked to tell people about my sons operations or other problems, not because Iam ashamed.....no way....I have always felt its not my right to let everyone know about my sons privacy. I have raised my son up to think he is no different than others, and I didnt and dont want people to interfer with his self confidence. Today he is 11 years old and he is so full of self confidence and that is what I want to protect. to be honest. Having bowel and bladder problems or sitting in a wheel chair actually make them better people

[leigh828]

My husband and I are both open to telling people that our son has SB. We certainly don't go into all of the details (bowel, bladder...etc) with everyone, but I think that it's important for people to know. People see how smart and happy he is and I want them to know that having SB doesn't change that. Before he was born, I knew nothing about it and I hope that he can make people understand that having SB isn't a "bad" thing and that there isn't anything "wrong" with him. In my opinion, it's also important that he knows that it's OK to talk about it, and that he shouldn't be ashamed or embarassed to talk about it. I also tell people becuase he is at the age (15 months) where he "should" be walking and climbing and doing some other things that he isn't quite doing yet...I would rather tell people what is going on rather then let their imaginations run wild. :) I guess there are a lot of reasons that we are open with it. I'm sure it's a personal decision for everyone.

[Jill]

Leigh, I'm completely the same as you for the same reasons. I don't want SB to be some big mysterious gloomy thing. It is what it is and I want him to one day be comfortable with it, so while I don't seek out reasons to discuss it, I don't hide it either.

[Gymp]

In thinking back it was my Dad who was schtum about the whole SB thing.My Mom on the other hand was quite vocal about all the surgery and whatnot that was going on with me.I remember her taking my shoes off and showing my Aunties how screwed up my feet really were.It was quite embarrassing for me but hey that's how my Ma is,upfront about everything while Dad preferred to keep stuff about me in the closet.

I agree Dodger,I felt the same way as you as a kid and younger adult.Now though it doesn't seem to be as big of a deal as it used to be,it's part of who I am.I don't broadcast my incontinence issues but it isn't as hard to say I pee in a bag as it used to be.My really good friends know all my problems,they've been around me long enough to have been there when I've had an accident....or two,when the rod broke in my back etc.It's not about what I am,it is who I am.

Gymp

[angel]

I am right in there with dodger on this one. It pissed me off to no end when my mom felt she would share my private business. I always hated that. I share what I am comfortable with the rest is only for privledged few. Members of this forum, and other people or families with a person that is affected wth SB. Other than that it isn't anyone elses business. Espically the bladder and bowel stuff. The reason I say that is it seems as though there are no boundry's for us sometimes. I can't tell you how many people have said to me "I have to tell about my bladder issues because if I am gonna be around them they need to know" Well to me that is crazy because i never asked my friends, etc... what they do when they are in the bathroom so why in the hell is it their business what I do? That is just a privacy issue in my opnion. I never share about my son either he is old enough if he wants someone to know he can tell them.

Angel

[Emm]

Something I had completly forgotten about until I read this thread.
My mother on meeting someone even for the first time, would whip me round in front of her, pull down my knickers and show my back scar to anyone at the drop of a hat.
When I went for my yearly check up at the hospital I would have to strip down to my knickers and, being a teaching hospital, would be met by a sea of between 15 to 20 students all staring at me. This carried on until I was in my early teens when I was quite well developed. I remember standing there being absolutely mortified while this doctor, a cheery (leery) sort of bloke, ogled me up and down saying I was his little miracle girl, as if I should be delighted at that.

Those were the days!



:peace:

[Ziggy]

it bugs me too, when DH or my mom introduce Micah to someone and start right in on "he has sb" stuff.

[Kari]

I tell people when it is necessary. If I drop him off at the gym childcare, I tell them about his shunt and G-tube so they are aware. Other times people ask about his braces, so I tell them a minimal amount of info. Pretty much anyone who knows us knows about him and what he's been through. Others know a little, and ask for more b/c they want to learn about him. I'm not embarrased and he likes to show people all of his special things. Right now, he's quite proud of his g-tube, and will pull up his shirt and show anyone.

[Gymp]

...I can't tell you how many people have said to me "I have to tell about my bladder issues because if I am gonna be around them they need to know" Well to me that is crazy because i never asked my friends, etc... what they do when they are in the bathroom so why in the hell is it their business what I do?...Angel

Schiiiit...(excuse the language) but heck,if anybody I know were to go blabbin' about my bathroom issues just because I was gonna be there with others who didn't know,I'd FREAK OUT BIG TIME.It's my business to tell not theirs.I know I've said it doesn't bother me as much as when I was younger to talk about my bathroom problems but that's for me to decide not the people I know.

Gymp

[mumtotwo]

It would be jamies grandparents who get on me on this they seem near proud to tell people about jamie. And how 'special' he is and bla blabla. I don't treat any different than katie unless needed and def wouldn't tell people. Of course friends and family know he sb and grandparents need to know about bowels/bladder as they mind him but i wouldn't tell anyone else about that, they don't change his nappy so don't need to know what in it. When he had a scar from the shunt people would ask and i just said he needed a wee op and it all ok now.

[NerdaliciouS]

I just wanted to say that I really hated having that happen too. I'd rather tell them myself or something. Actually, no, because as far as I was concerned, I was normal. I just didn't like my back touched.

As I got older, they knew I couldn't walk long, and if I had to go to the bathroom, I HAD TO GO. That's what people are allowed to know, they don't need to know the rest of the stuff that goes with it. =/

I am normal. NORMAL!!!!!! lol

I'll still answer questions if somebody asks, I'm a very curious person myself, so answering isn't as bad anymore, but I don't go announce to the world I have a "disability".

[Jess&Madi]

Nerdalicious (love the name by the way:), U say you're ok answering ?s, so just curious about how much it hurts when someone touches your back. I've often wondered what it feels like 4 my lil girl. Thanx

[NerdaliciouS]

Thank you. :p

It depends how hard the person touches it, lol. But I just don't like anybody touching it because it's uncomfortable. You know when you have a muscle kink/spasm, and there's that sharp-ish kind of pain that goes through? I get that when doctors poke me and what not. Otherwise, it's really not THAT bad, not unbearable, it just sort of... Radiates slightly from where I'm being touched.

But it's different for everyone!

[eng188]

So, just wondering if any other moms share this ... My hubby seems way more comfortable with my daughter than I do. For example, whenever she meets someone new he is quick to show them her shunt & even her scar (to family). I, on the other hand, prefer to keep it covered up with a hat. I am not ashamed at all, I just don't want to draw attention to her differences. People can figure it out for themselves. Although, I do like to warn people ahead of time about her shunt when they're holding her. Anyways, just wondering if anyone feels uncomfortable. Is it just me?

I'm chipping in here with a "victim's" point of view.

I used to absolutely HATE!HATE!HATE! my parents telling other people stuff about me that is none of their business. I was probably about 8 years old when it started bothering me but it took a few years for me to make it absolutely clear to them that they were not allowed to discuss my private stuff with people who do not need to know. As an adult its still strictly "need to know". The only people outsdide of my immediate family that know the gory details of my condition are medical professionals.
Even school teachers only knew enough to understand that I was allowed to go to the bathroom at any time, what I did there was none of their business.
Come to think of it - the members of this forum are the only "outsiders" with privileged access to my information.

Well, I don't go into Subway and say "I'd like a 12 inch with roast beef on Italian with onions, lettuce and chopotle, and by the by, I have spina bifida." but I don't get offended if people ask. I sure would love a "Hello, sir. Nice weather out today" or "How about those Red Sox, eh?" before that, though. I do like to think my disability is acknowledged, but not the sole element in how people identify me.

But if somebody is curious, they need to ask what my disability is. But then just go on. Don't launch into an inspirational story to try to relate.

[mellow mind]

My Mom and dad were really good about letting me tell people at my own speed.When i was younger my mom would make sure the adults in charge knew to be very careful during school and let them know my limitations.They never embarassed me.I was able to let my classmates know when i felt comfortable enough with them.

[sean]

Those were the days....my SB and me were well hidden from the public, 50's/60's.
But for anything hospital....me too, exposed to all. poked and prodded.

Jess&Madi, I'm thinking...could be just a 'man thing' with your hubby and a 'woman thing' that you notice.
I'm with hubby, love gadgets and devices, scares are awesome! (as simple as that).
Hey Mum, do you really have to warn people of the shunt, when she is just being held (as ?ott as that).
just thoughts....we appreciate being told, tell him. The LAST!!! thing he wants to do is hurt his daughter.

[Mustang Sal]

Something I had completly forgotten about until I read this thread.
My mother on meeting someone even for the first time, would whip me round in front of her, pull down my knickers and show my back scar to anyone at the drop of a hat.
When I went for my yearly check up at the hospital I would have to strip down to my knickers and, being a teaching hospital, would be met by a sea of between 15 to 20 students all staring at me. This carried on until I was in my early teens when I was quite well developed. I remember standing there being absolutely mortified while this doctor, a cheery (leery) sort of bloke, ogled me up and down saying I was his little miracle girl, as if I should be delighted at that.

Those were the days!

:peace:

Oooh this takes me back! This was a big part of my childhood too - rooms full of docs and med students having a crack at guessing what was wrong with my back (I always felt sorry for them when they got it wrong because my surgeon was a bit scary!)

I was always treated exactly the same as my sisters, and my mum certainly didn't bang on about my limitations to anyone who would listen. Family and close friends were aware of certain stuff, but most of the time it just wasn't an issue - my mum was and is a very 'can do' sort of person. She liked to focus on what I could do rather than what I couldn't. There was only one time that I can remember when she acted a bit out of character - I was quite young, and this grumpy old man had a go at her for parking outside the school rather than down the road, because I couldn't walk that far. Anway, during this argument my mum snapped and just whipped up my top to show him my scar, which I think shut him up! I think she just wanted to demonstrate that disabilities aren't always visible, and people shouldn't make judgements based on what they can see.

[Cookebeth]

I only tell very close family members, my mom and my sister about what we do. I don't think its anyone's business what another person does in the bathroom. My 6 year old asked about her sister being cathed and the enima recently, concerned about what other people will say or think, so I asked her if she knows what other people do in the bathroom when they shut the door. of course you can make an assumption but no one knows for sure.
when I was pregnant with Carrie I stopped telling people so many details because my mom had said to me to think of her as a teenager, would she want people to know her personal business. If someone asks about her, I'll tell them what she has and basic information if they keep asking but nothing that I wouldn't want to share about myself.
My opinion is if someone really wants to know what is actually involved in caring for a person with Spina Bifida, they can easily look it up and if they do so then they are going to find out but for the most part our society is too ignorant and self absorbed to care. After doing a fundraiser for an SB organization, I realized this one day when I was at work and a man who I say hi to in passing, came over to me and said he looked up what Spina Bifida was and what was involved. We had an intelligent conversation and he was being genuinely nice. When the people who are my friends that I grew up with have no idea and dont care to find out.

[angel]

Your mom is a wise woman. Your right it isn't anyone elses business. I would NEVER discuss it with anyone other than those who have SB and only do that because i feel it is my obligation to help in any way i can. We are all in pretty much the same boat in the SB community so to me that is ok. My mom never told anyone about my issues either as it would have humiliated me.

Angel

[Kat]

This post has really made me think. I generally tend to be an oversharer in most aspects of my life, but I have put some thought into who and what I tell about my son. He is almost 5 months so it hasn't really affected him yet. I have to fight the urge sometimes to tell everyone that he has SB, but the bigger part of me wants them to love and acknowledge him for him. I just want them to see him and think "What a cute baby!" Not, "Oh poor baby with a disability." I hadn't given any thought yet about discussing bathroom issues since he doesn't have to be cathed or anything yet. Thanks for this post and for everyone's opinions.