Concerned about my 14 year old

[karenee]

hi all. my daughter is going to be 14 in a couple of months. we are having some major issues with neatness and cleanliness among other things. and i do not know what else to do.

she is refusing to cath herself on a regular basis which is causing lots of leakage. she had the ACE done about 7 years ago and tries to refuse getting it done until i point out the obvious results of not doing it. she used to wear pull ups until she decided she was too old and i agreed to let her...couldnt disagree with her wanting to be more "normal" as she says. but even her responsiblities after hitting puberty (assuming most understand that without being blunt) have now changed! she has two siblings (sister,6 and brother,3) that have more knowledge about her situation than they should. i know that i dont understand...afterall i am just her mom. her brother is 3 and she has maybe said 20 words to him since he was born....she refuses to talk to him. her sister and her seem to have a normal "sister" relationship. im at the point i want to give up. doctors say its just b/c she is a teen. but i am concerned with depression. she has friends and seems to be ok there, but i know there is alot for her to deal with. its bad enough for "normal" teens to deal with everyday situations and i feel its harder for her. her dad is not keen on the psychiactric idea, so i am asking for ANY advice! Dont get me wrong, I am not going to let this go on much longer. but i would like to see if there is something i could try before i search out counselors...i dont even know where to begin to find one who would be good for her.

i want to thank everyone who reads this .... especially for any advice you are willilng to share.

God Bless. =0)

[angel]

Hi,

I have read your posts and want to say welcome to the group. I am 32 and I have SB Myleo. My son is 13 and he has SBO.
First off I don't want you to think of any responses here as negative. We are very supportive of eachother and are more than happy to help out in anyway possible.
I do agree that a lot of her behavior might have a lot to do with her age. My son is a teenager and she sounds a lot like him. There have been a lot of us here that have gone through those teen years and can understand. I remember when I was her age. I have a few theories on why i did some of the same things. I didn't want to be different, I was much older before I could embrase that about myself. Almost like if you ignore the things that make you feel different it then it isn't there, when actually ignoring it only makes it much more obvious to those around you that it is there. A lot of teens go through this and a lot of parents have had the same complaints that you do. If she is activly social that is a good thing.
As far as depression I never really suffered from it. I had my (really bad) attitude tword the world and everyone in it when I was her age but I wasn't depressed. Some others may have been. I, like your daughter, had friends and I was fine with that. Now that it is all over I look on my teen years as the best time of my life. Back then I would have said they were the worst.
My son has had issues with his care as well. he doesn't have to cath but he does have the neurogenic bladder which makes it necessary for him to find a bathroom ASAP. At one time (I think he was about 9 years old) he would just use his underware because he was to busy playing to stop and use the bathroom. He wouldn't put down the video game to go to the bathroom for the 2 minutes he needed. When i asked he said he was to busy doing (insert anything here) to go. One day when he came home from school his room had been emptied. When i say that i mean i took EVERYTHING except for his bed and blankets. I told him if he was to distracted to do his business then I would take away all distraction until he learned to take the time out to do what he needed to do.
For 3 weeks he had nothing to do, no books, no toys, no tv, no paper to draw on. He got the message that he would much rather take out the couple of minutes out of his busy schedule to take care of himself to get his stuff back. It really turned things around here. He has tried to slip a few times and go back to old habits but i quickly remind him that i did it once and if need be i will do it again. Usually nips it in the bud.
I figured out for my child he would not make his care a priority no matter what. As his mom i felt it necessary to make it a priority for him. They don't always care if it is what is good for them medically. So I had to find a way to make him care and it worked pretty good.
As for the attitude tword everything I got nothing we are fighting that battle too. I will never tell him but it amaizes me how much he reminds me of myself at his age. I grew out of it so i am just waiting as patiently as possible for him to do the same.

Hope that helps a little.

Angel

[Summer25]

Completely normal. I did my little rebellion a little later then her, but a lot of people on here have had that issue. All you can do is keep on her about cathing. I had the ACE and mitrofanoff done at the age of 12-13 and at about 16 was when I started not cathing and complaining about doing the ACE. I however, did have issues with the ACE, so it took a lot longer to do. I was supposed to go cath lunch, but didn't want to take the 10 minutes it took away from talking to my friends. I did unfortunately pay the consequences though. At the age of 22 I started having kidney issues and lost function in my left kidney. I had a blockage in my ureter. Nephrostomy tube after nephrostomy tube and stent after stent, it was finally decided to take the ureter out. My kidney function is back up, but at any point it could get worse again. I also was diagnosed with depression at the age of 12 and was placed on Paxil. I had a total of about 13 surgeries in 6 months and then got mono. I was never the same, so the doctor decided it was for the best to go ahead and try an anti depressant out. I am 26 and probably will never go off of it. Also, be aware that if your daughter is stuborn like me, she may decide not to even talk to a therapist. I spent a whole session sitting there not saying a word. Good luck and I hope things get better.

[Nettie]

Welcome Karen! :happy065:

I don't have any teenage children yet, but as a mother of 3, this has nearly brought me to tears:
her brother is 3 and she has maybe said 20 words to him since he was born....she refuses to talk to him.
It must break your heart (and his!). Can't you maybe force them to spend some time together? I don't know how good her functionality/mobility is, or how responsible she is, but maybe she can watch him for you at times? Or anything, just to force her to have a relationship with him?

[kidsrustx]

We are having some similar problems with my son. His is involving his bowel. He has always had constipation problems which began a habit of "holding it", which would eventually lead to soiling himself. Now we use Miralax daily to combat the constipation. Well, he was doing well for a while then he began to have "accidents" again. I have brought up the possibility of seeing a therapist. He doesn't want to see one, he says he's just being lazy. He gets "busy" and wants to try to "hold" it, but with the Mirilax, he can't. I can't understand why he would rather take the chance of embarassment (and it's gross) than to take 2 minutes to take care of business.

I've done the taking things away thing. It only worked for a short time. Plus we tend to rely on taking things away to get him to concentrate more on schoolwork. I'm at my wit's end. He's 14 for crying out loud! I've been thinking of going the enema route. Have him do an enema every night so that he doesn't have to "go" when he's busy doing something else.

[angel]

Let me state that the taking away thing worked for my child at that age (9). I to now reserve the taking away mostly for his performance at school. In the pre teen and teen stage we are in that is the most critical issue with him now. As he has grown what works for us has changed. I find that every child is different and what works for one don't always work for another. Just shared my experience with this particular issue and how we addressed it.
The cone enema is what we use to help keep him clear of impaction (it works ok) but we have him use it every other morning. I wake him up a little early so he will have time to do it. He is to the age where he doesn't want to be embarassed either. If there is nothing there then the accidents (at least at school) are much less than when he did it at night.
The thing that worked best for him was when he discovered girls! Let me tell you now that he has a girlfriend his hygene has improved dramatically!!!
Just FYI I found with a lot of his behavior lately that i was going about things with him the wrong way. I was raised where there was punishment when you did something wrong. I still live by that rule with him however I make a very concious effort to MAKE SURE that when he does stuff right (no matter how big or small) that I let him know I noticed and that I really appreciate that behavior. At this stage in his life that is what is working. He loves it when he is complemented on his efforts in school and at home and trys to do better.

Angel

[Dodger67]

The need to impress girls helped me "clean up my act" when I was at that stage.
Testosterone is an unbelievably powerful drug!:sign0020:

[Summer25]

Taking away things did absolutely nothing to me. You could take away whatever you wanted and I would basically laugh at you. I was a mean child...lol.

[sean]

I was a horrible teen, I wafted around in a cloud of stale pee. Even if someone told me I wouldn't have heard them. I was in my own blissfully ignorant adolescent world.
Until one day, who knows?? the planets were aligned, gods slapping me, a perfectly caught window of oppotunity, when I actually 'heard' what I was being told in black and white terms, "You stink You have to do something about it"
I always knew it, just chose to ignore it.
A combination of growing into social independence, the prospect of intimacy and being told by the right person at the right time turned my management and hygiene around.
For me, I was handed complete management of my Urostomy/ bag, and bowel management at 7yrs old, I was so over it by my teens. I can look back now and realise I was exhausted,(not lazy!!!) not physically exhausted, I think emotionally. The simplest effort to be clean and dry was a particular burdon, a weight I could never put down.
The general sense of rejection was better than no attention. Again in retrospect I think on some sub-conscious level I felt a bit of empowerment having this cloud of funk about me. I know wierd, it looks rebelious. I didn't want people to know, repelling people worked for me. Hey it was pretty much all wrong for the child I was.
More power to you mothers for being there!
Unqualified, not a parent, I know you know best but (gulp) I think disciplining "teens" (whats the point, make you feel better). Deprivation of material 'stuff' more a gift than a punishment. Punishment for struggling with continence management, ouch!
But hey if you feel better to be doing something?
May I suggest that if you have bathed and kept your soon to be young adults clean as children that when this grubby, hormonal, thick (as in Der!) teenage period grows away, your kids will be as management conscious as you have shown them.
How you further torment them with your ideals and punishments as young teens will be slapped right back at you once they're adults.
Always be there, but a bit of healthy neglect goes a long way with teens. Sorry but your best work is done, your role is changing from mother of child to mother of teen.
Teens need space to make and realise their own mistakes. Ouch!!! now the hard work is trying to sit back! and watch your child become the adult they are going to be.
Hopefully proud of your effort. Please be patient with your teens, please be sure about psych's and surgeries, interventions. Give them time to find themselves (letting go ouch!)
As I say no kids myself, my ?????dynamic/wild childhood/teens has given me (I think ) good insight into what "not" to do more than anything.LOL

[NerdaliciouS]

Pretty much what everyone else has said.
I'm sure all of us ignored whatever problems we had at one time or another. Usually we don't snap out of it till something bad happens! Which sucks! I always was aware of what I needed to do, how to do it, but I was either A) ashamed, B) embarrassed, or C) annoyed with it. I wanted nothing but to be "normal". Even if that meant suffering and everything else in between.
I'm sure she's aware of everything, and she knows what she wants and has to do. It's just the whole "if I ignore it, it'll go away" thing happening right now. And I had it around the same age, and even now sometimes.
As far as depression, though. I don't know your daughter, so I wouldn't really be able to say yes or no. But I do know that sometimes everything involving SB slaps you in the face and you just want to crawl into a dark hole and make it go away. I'm not a parent by any means, but regarding certain things, I wouldn't really scold them. I'd like to get to the bottom of things more than anything else, but that's just how I am. It works for some things, some people, not for others. If you want to know, don't throw accusations in her face, or ask the WEIRDEST questions, because, sometimes they ARE really weird, lol. But I'd come out and say that I've noticed _____, and if you need/want to talk about anything, I'm there for you. Sometimes they don't even take this advice till later on! I know from experience! I finally started talking to my mom! LOL! Amazing what parents actually know!
So yeah, I was the same way at that age. I ignored pretty much everything, and I wish I didn't because they probably would've been able to help me sooner. I do think it's just a "rebellion" factor, if you want to call it that. But she does need to learn that she is the one in control of her body. If she wants something to stop, she has to say and do something. If she wants something to happen, she has to do it. There's no need to be embarrassed or ashamed about it. It's her body, she needs to accept it, and deal with it the way she needs to. [Just because one thing's normal for one person, doesn't mean it is for another] She'll learn it in time. She probably already knows this.
And about the counselor thing - I hated them. I always did. It made me feel 50 million times worse about myself. Maybe she's just not used to the fact she has to share her parents with another child, again. I'm sure she'll come around.
I hope everything goes well. Even if it does take a while, I'm sure it will! :)

[MissVixen]

I have gone thru every issue there could had been as a teen with SB, I understand about the cath part..but it must be done and when I got old enough I suggested to my mom that I wore pads instead of "diapers", she is becoming a young women... please feel free to ask me anything.. since even thou it was 11 years ago I was that age, I remember what it was like as if it was yesterday. I don't think she needs therapy.. how is the therapist going to understand what she is going thru, if she isn't already joined a SB support group for teens I think she should it would be good for her. My mom was my best friend and still is to this day, I tell her everything...so if you have questions, I have answers.

[Nataly]

But this is DEFIENTLY normal, I was there 4 years ago. And I refused to use the restroom when needed. I grew up a little and realized that its very important for me to go.
This will pass.. good luck!

P.S
(In my opinion) kids should NOT have to go see a therapist. Unless there is something behavior problem. And teens are teens-rebellious. I think you want them teens to feel as comfortable and "normal" as possible (and the teen era is as awkward enough)

[Avocado Baby]

Hi there,

I went through exactly the same, but a bit later when I was a bit older. Unforuntately, I didn't make it very obvious so my parents didn't notice to be able to tell me off for it. I wish they had!!

As for the counselling/therapy thing. I'm finding myself getting a bit wound up because I'm training to be a counsellor now. I agree that a therapist can't 'know' or completely understand what a person with SB goes through, but that's the same for a lot of people who go and see a counsellor and have a disability that the counsellor doesn't. You should feel comfortable enough, after a while, once the relationship has developed to be able to tell them the 'gory' details of the things that SB entails. They really shouldn't be phased by it. It can be really hard as some of the issues such as incontinence are taboo, but counselling is a safe place for you to be able to talk about anything. If you don't feel comfortable with it, then you're not talking to the right person.

I completely agree that noone should HAVE to see a counsellor and if you don't feel it's right, then fair enough, but I've found it extremely helpful in dealing with the crap SB has thrown at me, including incontinence depression and feeling different.

You don't have to have anything 'wrong' to see a therapist. Sometimes just talking about life can really help with self-awareness and boost your self-esteem and acceptance.

Anyway, sorry I've gone off on one. I don't want to come across as argumentative. I just wanted to get my opinion across.

P.S I think Amercians just use the term 'therapist'. That's what I mean by 'Counsellor'.

[Lifeisgood]

Hi All,
I am in complete agreement with Avocado Baby. I think that for those who choose to see a counselor or therapist, there can be a lot of freedom in it and benefit. Unfortunately, I believe that there is a subset of the population who feel that counseling is taboo or that it is only for "sick" people. However, I strongly believe that there are times when even the most "healthy" person can benefit from someone who can listen to them without judging them or trying to "fix" them. Another benefit of counseling is that it also helps us to understand why we react in particular ways to different situations, which can help us to cope.

Granted, many teens don't want to go to a counselor and if they are forced into it, they might not open up as much as they would if they chose to go on their own accord. Another option might be introducing them to someone with SB who is their own age or perhaps a little older, who has empathy about what they are going through. Someone who they can commiserate with. I did not start cathing until a year ago, and this site was great for me to be able to talk with people who "got it." For teens to be able to talk with others who have to do it too, can be really beneficial.

[Dodger67]

We have a private section for teens but unlike the adults section it is hardly used at all.
Please invite your teens to join us.

[Emelsu]

hi all. my daughter is going to be 14 in a couple of months. we are having some major issues with neatness and cleanliness among other things. and i do not know what else to do.

she is refusing to cath herself on a regular basis which is causing lots of leakage. she had the ACE done about 7 years ago and tries to refuse getting it done until i point out the obvious results of not doing it. she used to wear pull ups until she decided she was too old and i agreed to let her...couldnt disagree with her wanting to be more "normal" as she says. but even her responsiblities after hitting puberty (assuming most understand that without being blunt) have now changed! she has two siblings (sister,6 and brother,3) that have more knowledge about her situation than they should. i know that i dont understand...afterall i am just her mom. her brother is 3 and she has maybe said 20 words to him since he was born....she refuses to talk to him. her sister and her seem to have a normal "sister" relationship. im at the point i want to give up. doctors say its just b/c she is a teen. but i am concerned with depression. she has friends and seems to be ok there, but i know there is alot for her to deal with. its bad enough for "normal" teens to deal with everyday situations and i feel its harder for her. her dad is not keen on the psychiactric idea, so i am asking for ANY advice! Dont get me wrong, I am not going to let this go on much longer. but i would like to see if there is something i could try before i search out counselors...i dont even know where to begin to find one who would be good for her.

i want to thank everyone who reads this .... especially for any advice you are willilng to share.

God Bless. =0)
Hi I am 16 and I had the same problems...I used to cath when I was little but then refused when I became a teen mainly because it started to hurt and I was so use to wearing diapers that I felt more normal if I wore them and that cathing would make me strange and not like all the other kids. What really helped me was to talk to a therapist and to my doctor privately (since she was a female doctor) and I now have catheters that don't hurt me and everything has been going fine. Really if she is like me she will be very sad for a while (I was for years and still am but not as much) but just talking with kids that also have spina bifida and talking to a therapist really helped me. I still feel miserable sometimes and sometimes just sit in my room and cry but it is nothing that my parents can help me with...If you want to help then have her talk to a teen with spina bifida...I am always here to talk if she wants to =) By the way if she does want to talk to me it wouldn't be a good idea to bring up that you talked about her to other people...she would be very hurt and embaressed.

[leila]

You guys are scaring me. I'm already kind of freaked about the teenage years. Our daughter is adopted, so I'm also preparing for/dreading the "you're not my real mother" attitude, and thus that comes with adoption. But all this time I was thinking how great it will be for her to learn to cath (she is 3 y/o) and take care of her own bowel/bladder, and now I have to worry about this?!? And the possibility that her teens will hurt her physical well being. Ugh. I feel exhausted just thinking about it. Glad I now have early warning though. Better than being taken off guard.

[Dodger67]

Teenagers are not really humans like the rest of us.
When they reach puberty kids are abducted by aliens and replaced with aliens disguised as teenagers.
After a number of years your original child is returned in adult form.
What happens to them while the aliens have them is the greatest mystery of the universe.

[NerdaliciouS]

LOL!
:bluesbrothers:

[francineok]

Hi,
I can sympathize with you and know what you are going thru. my son is 23, born with sb and pretty much self cathed since he was about 5 yrs. old (we did it for him for several years before that). He would be very lax about doing it unless you got on his back. Luckily, as he got older he learned that if he didn't cath enough it would lead to bladder infections and embarassing accidents.

I think sometimes that our children with SB just want to feel more "normal" and are in somewhat of a denial mode when they don't want to do all the things that other kids don't have to do.

Teenagers can be very cruel, but thank God there are good kids out there too that are accepting and kind. Your daughter will be ok...she's just getting into those oh so hard teen years where you feel so judged and unworthy. Keep talking to her and let her know that she is not alone...there are alot of people who deal with disability in this world. Take care.

[bcain]

This is what I've been told......The teen brain falls out, then over several years grows back again. Then you and the twenty-something year old can have conservations.

[Emelsu]

You guys are scaring me. I'm already kind of freaked about the teenage years. Our daughter is adopted, so I'm also preparing for/dreading the "you're not my real mother" attitude, and thus that comes with adoption. But all this time I was thinking how great it will be for her to learn to cath (she is 3 y/o) and take care of her own bowel/bladder, and now I have to worry about this?!? And the possibility that her teens will hurt her physical well being. Ugh. I feel exhausted just thinking about it. Glad I now have early warning though. Better than being taken off guard.
I wouldn't be too worried if I were you...I am 16 and I realize I am very difficult and annoying sometimes, but I don't know any teen that isn't just like me. All parents have to deal with their kids growing up and dealing with issues mainly when they are a teen...no matter if their kid is disabled or not.