is this wrong?

[jojo2605]

aww bless him sounds like hes been through alot. My LO is having a stoma reversal beginning of sept . Hope all goes well for u. x

He has been through a lot bless him, 6 operations so far, at the moment the bowel issue has taken quite a back seat, with him having his amputation 3 weeks ago but we'll be facing that head on in a couple of months! But you know what hun, we have been lucky as Sam has been able to come home after every operation and he is otherwise a very healthy little boy so I admire you so much for coping with your LO being in hospital so much. They do absolute wonders for our children but I'm not going to lie, I find them very draining and I'm only there a few days at a time, I can only imagine what it's been like for you having your LO in there for so long

I'm so pleased that your son is getting his stoma reversed, you must feel a sense of relief!! Does this mean that they have been able to lengthen the bowel enough? What sort of issues, if any do they invisage him having once the operation is performed?

 

[jojo2605]

I think we all get frustrated at times. We just can't be superwoman all the time!

DS2 is only recently out of nappies. April for daytimes nappies, just after he turned 5. I knew it wasn't his fault, but he would poo and not tell us. So a few hours of him sitting in it would not only spread it about, but it would dry and stick like flamin cement. I got so mad trying to clean this stuff off, especially if we were out and i couldn't just shower him. He'd get horrific nappy rash because of it which only made it worse. He would scream and flail about and all I could think was 'well if you told me when you did it, it wouldn't bloody hurt so much!'.

Then we got him out of day time nappies but he would only poo in a nappy (actually pull ups, but I just call them nappies). Id ask him before he went to bed if he wanted to poo in the toilet but no... First thing in the morning he'd take off his nappy, sodden with urine and poo from the night before then he'd try and clean himself and generally it would end up everywhere. The bed, the sofa, the bathroom....

It gets easier though. They do grow up and things do get easier. Whether they 'get better' or we just get better at coping... it gets easier. Probably we just accept that we are not perfect but we are as good as we can be and we stop beating ourselves up so much.

Hey angelstardust. i don't have any children diagnosed with autism but my 3 younger siblings were diagnosed at a young age and 2 of them had real issues with becoming clean in the poo department. Both were 6-7 before my mother and stepfather conquered it. It was like they just had a mental block when it came to pooing, they just couldn't fathom needing to do it in the toilet, It was hard having to change a 'grown up' poo and it was sometimes hard to understand how they could be comfortable being ok with it lying next to them when they looked so old. But they got there in the end

They are 16, 17 & 18 now and all doing fantastically well!!! 18 year old is off to uni in September, 17 year old is at college and 16 year old is acing his GCSE's already with a year to go.... It is totally amazing what can be achieved with the right sort of input. I'm sure you don't need me to tell you this hun as I'm sure you already know but I just thought it woudl be nice to hear positive stories as I find there's such a stigma surrounding autism at times

 

[angelstardust]

I think we all get frustrated at times. We just can't be superwoman all the time!

DS2 is only recently out of nappies. April for daytimes nappies, just after he turned 5. I knew it wasn't his fault, but he would poo and not tell us. So a few hours of him sitting in it would not only spread it about, but it would dry and stick like flamin cement. I got so mad trying to clean this stuff off, especially if we were out and i couldn't just shower him. He'd get horrific nappy rash because of it which only made it worse. He would scream and flail about and all I could think was 'well if you told me when you did it, it wouldn't bloody hurt so much!'.

Then we got him out of day time nappies but he would only poo in a nappy (actually pull ups, but I just call them nappies). Id ask him before he went to bed if he wanted to poo in the toilet but no... First thing in the morning he'd take off his nappy, sodden with urine and poo from the night before then he'd try and clean himself and generally it would end up everywhere. The bed, the sofa, the bathroom....

It gets easier though. They do grow up and things do get easier. Whether they 'get better' or we just get better at coping... it gets easier. Probably we just accept that we are not perfect but we are as good as we can be and we stop beating ourselves up so much.

Hey angelstardust. i don't have any children diagnosed with autism but my 3 younger siblings were diagnosed at a young age and 2 of them had real issues with becoming clean in the poo department. Both were 6-7 before my mother and stepfather conquered it. It was like they just had a mental block when it came to pooing, they just couldn't fathom needing to do it in the toilet, It was hard having to change a 'grown up' poo and it was sometimes hard to understand how they could be comfortable being ok with it lying next to them when they looked so old. But they got there in the end

They are 16, 17 & 18 now and all doing fantastically well!!! 18 year old is off to uni in September, 17 year old is at college and 16 year old is acing his GCSE's already with a year to go.... It is totally amazing what can be achieved with the right sort of input. I'm sure you don't need me to tell you this hun as I'm sure you already know but I just thought it woudl be nice to hear positive stories as I find there's such a stigma surrounding autism at times

He is finally out of nappies by night too. Not properly because he wets the bed about 3 times a week, but he goes to the loo for a poo. I chose a wet bed rather than a nappy. Rubber sheets!

He doesn' have Autism but does have Autistic tendancies which goes along with the Hemiplegia. Basically, a lot of kids with Right sided Hemi (CP down one side, in his case his right) have mild-moderate Autism-like traits, the emotional and behavioural traits, not so much the social problems.

So I can identify with Autism even though officially he isn't Autistic.

So much focus on labels eh? Whether to stamp them or avoid them.

 

[xxHollaxx88]

aww bless him sounds like hes been through alot. My LO is having a stoma reversal beginning of sept . Hope all goes well for u. x

He has been through a lot bless him, 6 operations so far, at the moment the bowel issue has taken quite a back seat, with him having his amputation 3 weeks ago but we'll be facing that head on in a couple of months! But you know what hun, we have been lucky as Sam has been able to come home after every operation and he is otherwise a very healthy little boy so I admire you so much for coping with your LO being in hospital so much. They do absolute wonders for our children but I'm not going to lie, I find them very draining and I'm only there a few days at a time, I can only imagine what it's been like for you having your LO in there for so long

I'm so pleased that your son is getting his stoma reversed, you must feel a sense of relief!! Does this mean that they have been able to lengthen the bowel enough? What sort of issues, if any do they invisage him having once the operation is performed?

Heya, well he has had a lenghtening op and it went well, gave him about 60cms after rather than about 25/30cms. He will still need to be fed through his tube in his chest till he can absorb enough for what he needs to live, because he eats normally but doesnt absorb it all x

 

[Emmea12uk]

I feel the same so often when I am cleaning up my son for the fourth time in the hour, and the moment I put his nappy on he does it again. I feel so angry, guilty, sad and emotional that I just want to scream. I feel like I can't keep doing this and I tell myself I am a bad mother to be thinking about myself. I feel so bad for feeling that way. Sometimes it all gets too much and I just want to cry but I can't let him know I feel that way, because I don't want him to see it and blame himself. Grrrrrrrrrrrr

 

[Groovychick]