Bathroom's being remodeled (+ a mini rant)

[Justy Me]

I am having my bathroom remodeled to accommodate me. When I first moved here the bathroom was SUPPOSED to be accessible due to SUPPOSED " experts" in accessibility ( far from it)....Well it's been 20 years coming but I'm FINALLY going to be able to take a shower on my own with the door locked!!!

I'm excited....and I would be even more so if I weren't reminded of how much of an inconvenience the process will be for everyone til it's done. The bigger picture seems to be lost on everyone but me. I've heard " oh but your bathroom was SOOOOOOOO nice, why ruin it " at least 100 times in the last few days. Basically my bathroom had the fanciest tiles....It's being covered by my state's HomeMod program, and I am incredibly grateful that I was approved. I wish I'd known about the program years ago. Yet I feel as though I can't fully enjoy it, like I should feel guilty for " ruining" the pretty bathroom that I've been unable to fully use up to this point. I just don't get my family's reasoning sometimes. My comfort should be more important than what is aesthetically pleasing!

[irish eyes]

The tiles must be beautiful :) I'm sure when your able to take a shower on your own your families comments will flow away like the water down the drain..enjoy!!

[Justy Me]

The tiles must be beautiful :) I'm sure when your able to take a shower on your own your families comments will flow away like the water down the drain..enjoy!!

You know....I'm sure you're right! :O) thank you...Oh, and yes the tiles ARE beautiful...they were made of GOLD!!! ( okay not really but you would think they were! haha )

[irish eyes]

haha well the price of gold these days you would be making a fortune selling the tiles ha
if i was you id be honest with your family and tell them how it is and that you don't need a fancy bathroom you need a practical bathroom :)

[misty]

The prettiest bathroom in the world is garbage if you can't use it. I wonder why they're being so weird?

[Justy Me]

The prettiest bathroom in the world is garbage if you can't use it. I wonder why they're being so weird?

So true...I don't know. They are hung up on appearances and maybe they assume that the end result will look like a hospital room. I've seen their ( the remodeling co.'s )work it's fabulous..so that's not a concern I have at all.

I just noticed I wrote " fanciest tiles" without the quotations lol. I meant that to be a sarcastic comment. I keep hearing that they were the nicest in the house because they had a flower design, as opposed to the solid color in the other bathrooms. My mother keeps sighing when she passes it today....geez.

I also think it kind of scares them to see that I am doing more to be more independent. But, shouldn't that be celebrated??

[Justy Me]

haha well the price of gold these days you would be making a fortune selling the tiles ha
if i was you id be honest with your family and tell them how it is and that you don't need a fancy bathroom you need a practical bathroom :)

LOL maybe I should do that! To hell with government checks!!! hehe...

I have told them a few times now that the dumb tiles on the wall mean nothing since I was barely in there anyway. I wash my hands in there and that's about it. I believe that the sink is the reason why my body hurts so often on my right side. I had a sink with a cabinet and it was uncomfortable to have to lean over sideways all the time. I will NOT miss that!

[sean]

Beware the saboteur, independence worth far more than gold.

[Justy Me]

Beware the saboteur, independence worth far more than gold.

You are wise, dear Sean, so wise. :) I fully agree.


I'm upset that they gave me a shower chair that has immovable arm rests. Why, oh why would they do that? That defeats the purpose just a smidgen, no? I am going to have to try and get it switched by the time the room is done.

[sradz]

so true! getting independence is priceless!

[Melz]

The prettiest bathroom in the world is garbage if you can't use it. I wonder why they're being so weird?

That's it.

Justy Me: I get you about leaning sideways over the sink. That's what I have to do right now, but we are remodelling later on this year since we've FINALLY got the money after 24 years.. Nothing too fancy, just the essentials for me (my own bathroom, my own lower area in the kitchen, and I think we are ripping up the carpet and putting tiles or wood so I don't have to try to vacuum). I'm kinda hoping my parents will put my needs over the "look" of everything.

I also think it kind of scares them to see that I am doing more to be more independent. But, shouldn't that be celebrated??

I've noticed that with my mum. Sometimes when I try to do something for myself, like moving a chair out of the way so I can sit at a table. She just steps in and does it for me and says "You know you can't do that, so why try?". Actually, I CAN do it, it just takes me a little longer, and the chair might not go exactly where mum would put it... I think it could be that she doesn't want to feel like she isn't needed and my life still depends on her..

[Dodger67]

Wow, my family are the opposite!
If I ask my brother to get me a beer (while he's at the fridge getting himself one anyway) he'll sometimes joke and say "Get your own beer! Are you paralysed or something?"

Parents, please don't cripple your children by doing everything for them!

[Melz]

Wow, my family are the opposite!
If I ask my brother to get me a beer (while he's at the fridge getting himself one anyway) he'll sometimes joke and say "Get your own beer! Are you paralysed or something?"

Parents, please don't cripple your children by doing everything for them!

The strange thing is, they complain that I'm not independent, yet they do things like I said in my previous post. I just can't win with them.

[Dodger67]

You should specifically point out this inconsistency in their behaviour and make them understand how destructive it is - to you, not them.
So next time your mother won't let you move a chair say to her: "You complain I'm not independent but you won't let me move this chair."

A story from my childhood. I grew up on a sheep farm (ranch to Americans). There's a huge willow tree behind the house so logically a tree house got built in it. The only concession my siblings (sister and two brothers) made for me was a knotted rope to climb as I could not climb the trunk and branches like they did. They made the tree-house "disabled accessible" but not easy to get to.
My mother's only comment - to all of us, not only me: "If you fall and break your neck don't come crying to me about it!"

You havn't lived until you've broken a bone while having fun! :Banane21:

[Melz]

You should specifically point out this inconsistency in their behaviour and make them understand how destructive it is - to you, not them.
So next time your mother won't let you move a chair say to her: "You complain I'm not independent but you won't let me move this chair."


I actually say that exact sentence to her, but I add "stop trying to take away the little independence I actually have" with it. But the next time I move the chair it's the same situation. I'm not going to stop (trying) to do stuff like moving the chairs, it's just annoying being told off for it.

[Dodger67]

Maybe you should get really angry about it - show some aggression. Sometimes a tantrum can help get a point across. Of course that depends on you family dynamics. In my family an occasional shouting match is a useful pressure relief mechanism but in others it may have longer term negative consequences.

[sean]

I agree with Roger, if you find a 'situation' repeating itself, you need to attack it differently. Not a vulnerable victim ending in tears tantrum of childhood.
An assertive stand your ground negotiation for change in attitude.

Just want to remind you it takes two. Just as you are wanting some independence, your folks (who 'know' you're maturing wanting independence) are probably freaked out to the point of denial of having to give up thier years of the fulfilling dependence of children/parenthood. I wonder are they aware/prepared for ?stage ? adults as thier children. eek!
Another thought, if you want to be heard/recognised as an independent individual, you just need to be as independent as you can within yourself, consistantly. In every possible way, do it for yourself, always.
I suspect it needs to take a lot of independent achievement for parents to accept thier baby has grown.
Have you surprised your parents with your independence lately?. Are you taking total control of your well-being?. Are you contributing to the family unit?

[Justy Me]

That's it.

Justy Me: I get you about leaning sideways over the sink. That's what I have to do right now, but we are remodelling later on this year since we've FINALLY got the money after 24 years.. Nothing too fancy, just the essentials for me (my own bathroom, my own lower area in the kitchen, and I think we are ripping up the carpet and putting tiles or wood so I don't have to try to vacuum). I'm kinda hoping my parents will put my needs over the "look" of everything.

My bathroom is officially done today, and my parents feel like fools. LOL good for them, I say!! It looks so nice in there, nothing at all replicating a hospital room. I never thought it would and I am happy that I can gloat as to how right I was to have done this for myself. :) I'm sure your parents will react much in the same way, once it all comes together.

I've noticed that with my mum. Sometimes when I try to do something for myself, like moving a chair out of the way so I can sit at a table. She just steps in and does it for me and says "You know you can't do that, so why try?". Actually, I CAN do it, it just takes me a little longer, and the chair might not go exactly where mum would put it... I think it could be that she doesn't want to feel like she isn't needed and my life still depends on her..

I don't get quite THAT much interference but I do hear " you'll never be able to FULLY care for yourself/ live on your own so why try ( whatever it may be that I want to try getting better at....i.e cooking, vacuuming ). I feel the same way as you, I believe parents of kids ( or in my case now, adults ) w/ disabilities feel as though they have a reason/right to hold on to the "job" of raising their children. But at some point it has to stop. I've been more proactive about enforcing that POV lately because I just can't take it anymore. I don't want to feel like killing myself when they die ( due to a feel of " how will I survive" or God forbid, being placed in some institution--won't happen as long as I'm alive!!). So doing what you can for yourself is important.

[Justy Me]

Maybe you should get really angry about it - show some aggression. Sometimes a tantrum can help get a point across. Of course that depends on you family dynamics. In my family an occasional shouting match is a useful pressure relief mechanism but in others it may have longer term negative consequences.

I've found that when you take a stance and are firm on it ( not showing weakness ) that you make the most headway. At least that's what's been working for me recently. My mother doesn't yell like she used to because I answer her in a strong firm way, to show I know how I feel/ what to think, and that outside opinion won't influence it--not even from her. My father has all of a sudden become a support system against her....He is constantly telling her now that I am an adult and that to treat me differently makes her look like she can't accept it, not that I actually need her as much. Mind you, I know I will always be the baby so it isn't a lack of respect for my parents as much as it is honoring my respect for myself. I guess a lot of progress has been made in my frame of thinking lately and that's something. Who'd have thunk that a new toilet could do all that lol, maybe I should go flush to celebrate ?!? :-p

[Melz]

You guys don't know my mum. Backing down just isn't her.

I'm not really in panic mode yet. Hopefully she does back off at some point. I'm definitely not going to let her make me feel useless and stop me from trying to do things....even if it means a telling off.

[Justy Me]

Okay so....as I've been talking about lately I just had my bathroom remodeled. LOVING it....but I am trying to figure out how to store some of my things that I don't necessarily want on display, now that I no longer have any cabinets. I wanted your input on any ideas you may have, as many of you may also have accessible bathrooms and such. Of course, I have also been googling and trying to figure things out on my own ( love perusing online stores!) but I thought that it wouldn't hurt to see what has worked for you all. Thank you!

[misty]

If you're talking about catheters or woman type items, we keep my caths in a extra toiletpaper container. As long as we keep a roll of tp out, guests never know that isn't extra toilet paper in there. I think womanly items would fit in there well also.

[Melz]

I'm glad I come here. I never would have thought of that problem. I'm getting a seperate bathroom for myself so it probably wouldn't be a problem, but I guess I'd keep a catheter in an old toothbrush container in the back of a cupboard or drawer. I used to do use the container when I took my catheter to school. There was only 1 occasion where my bag was open and someone asked "why do you carry a toothbrush to school?".

About my previous posts in the thread - there was success today! I moved a chair out of the way and mum didn't say a word about it lol

[Justy Me]

If you're talking about catheters or woman type items, we keep my caths in a extra toiletpaper container. As long as we keep a roll of tp out, guests never know that isn't extra toilet paper in there. I think womanly items would fit in there well also.

Yeah, basically I'm referring to catheters and surgilube and all that kind of stuff. I would have never thought to put catheters in a toilet paper container! Interesting....thanks for the suggestion :)

[Justy Me]

I'm glad I come here. I never would have thought of that problem. I'm getting a seperate bathroom for myself so it probably wouldn't be a problem, but I guess I'd keep a catheter in an old toothbrush container in the back of a cupboard or drawer. I used to do use the container when I took my catheter to school. There was only 1 occasion where my bag was open and someone asked "why do you carry a toothbrush to school?".

About my previous posts in the thread - there was success today! I moved a chair out of the way and mum didn't say a word about it lol

I'm glad you come here, too! It's in helping others that we help ourselves...that was a good idea you had as well, I could do that for catheters that are currently in use. Does it fit or do you wrap it around itself before putting it in there? Good to hear you made headway with your mother.

I'm glad I posted this whole thing on here...it's been a great help to me!

[Melz]

I'm glad you come here, too! It's in helping others that we help ourselves...that was a good idea you had as well, I could do that for catheters that are currently in use. Does it fit or do you wrap it around itself before putting it in there? Good to hear you made headway with your mother.

I'm glad I posted this whole thing on here...it's been a great help to me!

My catheter fits in. I don't have 1 next to me so can't tell you how long it is but I'll measure 1 later lol

[sbmama]

When I have to take caths with us, I put them in a little soft pencil case/pouch that zips. I can fit the cath, lube, and a little bottle of hand sanitizer in there. The caths we use are only 6".

[angel]

My family was the just the opposite like rogers. In my house if i wanted to do something myself then i was encouraged to do so. From as far back as i can remember i wanted to do everything for myself. I had a few people say things to me such as "you will never be able to take care of yoursef" hello had they not been paying attention lol. Either way i proved them all wrong. Just because they couldn't do it didn't mean i couldn't.
Also in my family like roger said sometimes you just gotta fight it out. My mom would say it is your body if you break something we will take you to the hospital and get a cast put on it. She knew i was going to do what i wanted to with or without her permission. She raised me to have a mind of my own and to not be afraid so that fierce independance was strong.
I finally just left the people that gave me problems out of my decisions and out of the loop as much as possible. My mom was a supporter so i can imagine that would be harder if you live in the same home. My dad and my grandmother were never told anything till after it was done. It is SOOO much easier to get forgiveness than to get permission!

Angel

[Justy Me]

My family was the just the opposite like rogers. In my house if i wanted to do something myself then i was encouraged to do so. From as far back as i can remember i wanted to do everything for myself. I had a few people say things to me such as "you will never be able to take care of yoursef" hello had they not been paying attention lol. Either way i proved them all wrong. Just because they couldn't do it didn't mean i couldn't.
Also in my family like roger said sometimes you just gotta fight it out. My mom would say it is your body if you break something we will take you to the hospital and get a cast put on it. She knew i was going to do what i wanted to with or without her permission. She raised me to have a mind of my own and to not be afraid so that fierce independance was strong.
I finally just left the people that gave me problems out of my decisions and out of the loop as much as possible. My mom was a supporter so i can imagine that would be harder if you live in the same home. My dad and my grandmother were never told anything till after it was done. It is SOOO much easier to get forgiveness than to get permission!

Angel

You and Roger were the lucky ones, then. A good support system is what makes or breaks us and our experiences are vastly different because of it. It's easier to be your own person when you have had the proper outlets to do so. When no one believes in you, it's harder to believe in yourself. Doesn't mean it can't happen but that "light bulb" moment happens much later. And for us, the power/ability to someday become full fledged self-reliant adults, is contingent upon the support and cooperation of loved ones.

[Justy Me]

My catheter fits in. I don't have 1 next to me so can't tell you how long it is but I'll measure 1 later lol

LOL you don't need to do that but I appreciate the effort. ;)

[Dodger67]

You and Roger were the lucky ones, then. A good support system is what makes or breaks us and our experiences are vastly different because of it. It's easier to be your own person when you have had the proper outlets to do so. When no one believes in you, it's harder to believe in yourself. Doesn't mean it can't happen but that "light bulb" moment happens much later. And for us, the power/ability to someday become full fledged self-reliant adults, is contingent upon the support and cooperation of loved ones.

Amen! You are absolutely right.

I was raised in the knowlege that I have a fully committed support system behind me. Of course that does not mean I never stuffed up - I've had my share of disasters - flunking out of university, losing my first job, etc. but the support system is always there.
I can even call on aunts, uncles, cousins in a crisis, they will help me out of a hole (and have done it). My support system is very good - but I still have to fetch my own beer! :dance2:

[Melz]

When I have to take caths with us, I put them in a little soft pencil case/pouch that zips. I can fit the cath, lube, and a little bottle of hand sanitizer in there. The caths we use are only 6".

Yep I've used that as well. Or it might have been a small make-up bag....but same basic thing. Worked well.

[vnmaria]

Long time ago, we had to renovate (ruin) our bathroom just so that our eldest daughter can take a bath or shower independently.

The bathroom originally was a roomy, completely wet bathroom. I liked this kind of bathroom because I can have a few children take a bath in there at the same time and I can watch out for them together. As it was too dangerous for my eldest to stand on a wet bathroom floor, she sat on a stool in there. I helped her take a bath. When she was 15, she kept begging me to renovate the bathroom. I didn’t want to because I loved my bathroom so much but my husband agreed with her. The wet bathroom was renovated to a dry bathroom with a small cubicle and shower chair attached to wall. So most of the bathroom space is unusable for showering (which means I can no longer bath 3 children at a time). But my daughter was so happy that she no longer need to depend on me to bath her.

I didn’t think her independence was important that time. I think she no need to be embarrassed and uncomfortable with her own mother. Also I was afraid she will slip and fall if I leave her alone when she takes a shower so it's better if I help her take a bath. I got over that bathroom and got a new one built for the rest of us.

I am glad that you are happy. I hope your parents already got over it.

[Melz]

Long time ago, we had to renovate (ruin) our bathroom just so that our eldest daughter can take a bath or shower independently.
I'm sorry, but I think that is a really bad attitude for a parent to have. It shouldn't matter what it all looks like. The important thing is that it is to help your daughter become independent.

You are not going to live forever. She needs to learn to cope by herself.

I am glad you got over it, but I don't think it was something you should have needed to get over.

[vnmaria]

I'm sorry, but I think that is a really bad attitude for a parent to have. It shouldn't matter what it all looks like. The important thing is that it is to help your daughter become independent.

You are not going to live forever. She needs to learn to cope by herself.

I am glad you got over it, but I don't think it was something you should have needed to get over.

Yes I know, I admit I was selfish that time.
I am just trying to let the op know that the feelings her parents have are normal and they will get over it after they see how happy she is.

[vnmaria]

Wow, my family are the opposite!
If I ask my brother to get me a beer (while he's at the fridge getting himself one anyway) he'll sometimes joke and say "Get your own beer! Are you paralysed or something?"

Parents, please don't cripple your children by doing everything for them!

I think most parents feel that their children need more help due to spina bifida, even if not directly related to spina bifida. Their life is already harder so we help them do the little inconveniences. Example: When I bought my daughter laces shoes when she was 5 years old, I automatically tie her shoe laces because I think it's too much trouble for a 5 year old especially with spina bifida. But she wanted to learn how to tie laces. After some practice, I was surprised she was able to tie shoe laces the same night she got the shoes. Back then I would still rather do it for her because even she knew how to tie, it wasn't really tight and often got loose. But she kept tying until she got better and finally did the double knot.

[Dodger67]

SB has absoloutely nothing to do with tying a shoelaces.
Her feet are affected - NOT her hands!

[Justy Me]

I'm sorry, but I think that is a really bad attitude for a parent to have. It shouldn't matter what it all looks like. The important thing is that it is to help your daughter become independent.

You are not going to live forever. She needs to learn to cope by herself.

I am glad you got over it, but I don't think it was something you should have needed to get over.

Agreed. Parents limit their offspring more than anything else as far as I'm concerned.

[Justy Me]

I am glad that you are happy. I hope your parents already got over it.

they did, within days. My bathroom is now the best looking room in the house. Now if only I could get them to change elsewhere. It's sad when parents describe improvements in their quality of life as moments of "ruin"....

[erin86]

So you previously needed assistance with showering?

At how old should those of us with SB start showering on our own? I started showering alone in my early teens, but someone often helped me with washing my hair.

[Dodger67]

I was bathing independently well before my teens - in fact I'd say that SB had no effect, I started at the same age as my siblings. My lesion is at L3.

[Melz]

So you previously needed assistance with showering?

At how old should those of us with SB start showering on our own? I started showering alone in my early teens, but someone often helped me with washing my hair.

I don't think anyone can really put a number on it. I think it depends on a few factors like the severity of disability, wheelchair accessible bathroom, is it safe to do so etc There are probably more factors but I think those would be the main ones.

I mean, obviously you want to be as independant as possible from as early as possible, but sometimes you have to think about your particular situation and what you can actually do.