Toilet Training dd with CP

[jenk1]

sigh...........
got greeted on monday with "she.s been on the potty today, can we have knickers and spare pants tomorrow" so me and dh just looked at each other and i said ok.
she has been going on the potty for over a year but she doesnt do anything, and she,s never dry. she is copying the other children when they go on the potty, and she wants to wear knickers but yesterday i got told she was walking around like "john wayne" cos her trousers were wet
"oh but she tells us when she,s done it"
but i cant get them to understand that she CANNOT control her bladder.
anyway i went in this morning and said it stops, its not fair, she cant help it, lets try again in 6 months but they dont understand.
has anyone else had this?

Hi Jenk. When my ds was 3yo and at Conductive Education nursery, the teacher said in a jolly voice, "he's ready for toilet training, I just know he is!" He was absolutely not ready, but we gave it a go for a short time...then I decided it was not fair.

In total we tried this 3 times, and the third time it was my idea, I thought he was ready at last, at the age of 4 1/2 years. I thouht he was ready because he was interested in the potty and happy to go on it after meals and snacks (with pull ups inbetween), and did the odd wee or two, so I put him in pants.

It still took one year!! He was wet every day for a whole year, sometimes only one accident a day, sometimes lots but I persevered and finally the dry days outnumbered the wet ones. Even now, aged 8, he still has accidents occasionally if he is too busy to go the the toilet!! But for the whole of the 6 weeks hols he was dry (still wears a nappy at night).

so the moral of the story is, you know your child more than nursery/school, and don't be pressured into it. And there's more to life than being in pants! But for a CP child, potty training can be slow because everything else happens slowly!!

Helpful? Hope so!

this is what i told them today, i said that children with CP even mild like dd are usually later than other children, she is not dry ever in her nappies and just walks around with wet legs/pants and cos she also has a communication disability isnt able to properly say to them, also her eczema has come back on her legs since they tried.
we had resigned ourselves last week to waiting until next spring and trying again.

dd is 12 and we have only just got ther(reliant on the carer being on the ball)
we tried dd in pants when she was about 5/6 it was a disaster. and put her off.
we use pull ups. that way she can sit on the toilet when needed. but if she has an accident no embarresment.
they are out of order. and should understand that your dd will not be ready just because they say so,
(oh and I also put pants over the pullups)

AAARRRGGHHHHH
Just been to pick up dd from nursery, her senco said "she,s been asking to go to the toilet" right we said, well she wants to go, yes she wants to be like the other kids we said, well it seems a shame that she has to wear nappies, what did the hospital say?
so we repeated what i said this morning and they said could we get a letter from her consultant.
so, they obviously dont believe us or understand us, dh is phoning the consultant now, im fuming.

Common sense told me that my ds had to know how to tell anyone he needed the toilet, before potty training could begin in earnest. We gave him a symbol of a toilet (makaton) and taught him the sign for toilet. Once he had mastered this, we could then move onto removing the nappy.

Now at aged 8, he can finally say weeee!!!! YES at last! (Speech being a very poor attribute for my ds unfortunately).

So your dd nursery doesn't seem on the ball - is it mainstream or sn?

well its supposed to be an ICAN nursery for children with speech difficulties.
i dont think they have had a child with hemiplegia before, they certainly dont seem tobe able to understand dd,s needs.

Jenk - i'm sure she's just doing what all the other hemiplegic kids do, take ages to get dry,its not her fault as you know.

I hate to even mention this, but ds, 7 next week with hemi, was diagnosed with a neuopathic bladder 6 months ago, after us try to get him dry for years. We take him to a fab consultant in London, Anne Wright at Evalina Children Hosp, St Thomas in London, even tho we are out of area. Just thought i'd mention it, good luck.

Hello Jenk

Ds1 is still in nappies his ms school. We tryed over the holidays (tryed being an understatement!). We finally got him to do a poo on a potty-chair thing. I am sure he has a phobia about the loo. He will do a wee on it but no chance of a poo yet. Trouble is with him not being able to speak and also he can only use one hand, he needs assistance to get his trousers down etc, so independence is a long way off.

The school are o.k. with his nappies and his 1:1 takes him to the loo at regular intervals. It has never really been an issue with him wearing nappies at school (good job because if it was there would be a lot of mess!). Can't believe your school needs 'proof' from the consultant. I think I would be marching to the head right now if I were you. Does dd have a statement?

no, we are starting the statement process off in a couple of weeks.
dd,s psych has gone mad and said write to them and tell them that you are sending dd in nappies as advised by her consultant and that if they have a problem with that then they can write to the hospital themselves.
luckliy the head teacher of the school we want her to go to is very understanding and has told us to put in for a statement for her.

Your lives may be a little easier once you have that statement. Unfortunately, schools seem to prefer to have things in writing (i.e. a statement or letter) before they believe it. I remember when Ds1 first started at ms nursery (he is now in receiption/year 1). The toileting facilities were not really adequate and the school didn't even have a nappy bin. His nappies were put back in his ruck-sack for me to throw away......even the yucky ones!. So out came the pen and paper and I wrote to the head saying how dirty this was considering Ds1 had sandwiches in his bag aswell. There was soon a bin in place after that. Ds1 has hemiplegia and I am sure there are more complicated physical problems aswell. He has a 1:1 helper all day and couldn't go to ms if he didn't. I am sure when a statement comes along for your Dd, things will seem less of a struggle for you.

In the meantime, get that letter to the head on file saying how you 'seem to be struggling to make yourselves heard!' with regard to your dd's toileting.

Stick to your guns!!!

jenk how old is your dd?

I have some specially made pull-up cloth pants for my (very thin) 4 yr old with CP when she was in this situation

they both pull on and pop of (ie open down the sides). Are pink

I have 3 they wash and dry v quick they are yours if you want them

cappucino, she is 3.6, i would be very grateful for the pull ups, my email is [email protected], thanks

dd,s consultant has just phoned me and i told him the situation and he said RIGHT, your daughter has a weakness with her bladder AND her bowels, i will get a letter done immediately and send it to you.
im going to do a covering letter with it.

they make me feel that im doing something really bad for her when all im doing is treating her as she deserves to be treated.
the senco is sooo patronising, she even said to me yesterday i presume you have gone through the potty training with mikey and he,s dry?
thanks for all the advice, i really appreciate it.

dd is 12 and we have only just got ther(reliant on the carer being on the ball)
we tried dd in pants when she was about 5/6 it was a disaster. and put her off.
we use pull ups. that way she can sit on the toilet when needed. but if she has an accident no embarresment.
they are out of order. and should understand that your dd will not be ready just because they say so,
(oh and I also put pants over the pullups