Paeds backtracked

[jenk1]

got a letter this morning from dd,s paed.
he has backtracked from the " dont attempt to toilet train her for at least 4 months"
to

can i have your permission to contact dd,s nursery to get the staffs observations as to whether she is resisting toilet training as he feels that because she is now 4 we should start somewhere, he also wants to ask them about her behaviour in the nursery.

oh well i know what their answer will be.
we say black they say white.
dd is still refusing to go anywhere near a toilet/potty and is not for giving up her nappies, now he dx,d her with hemiplegia and told us time and again that its probably due to a loss of sensation that she is reluctant to toilet train.
surely he,s not going to make us toilet train her against her will?

When does the 4 months end?

in july.
think the nursery have been on to him, they are desperate to get her trained before she starts school, particularly as we are at tribunal on the 20th of may and the only SN they agree she has is not toilet trained.
they completely ignore

her language delay
her obsessiveness over routines and rituals
her social and interaction difficulties.

she sees the psych at CAMHS next weds for the first time where hopefully we may get an answer for her difficulties (we know she has an asd as her first paed suspected it nearly 2 years ago but nursery refuse to accept that she shows any of the triad)

thing is i WANT her toilet trained, i mean i love changing dirty nappies after 4 yrs but not at the expense of stressing her and making her completely anxious.

Your child - your choice.
I think that you should appease them by saying that YOU will try it in the summer holidays - so you're not saying you won't try, and you're not saying you're ignoring their advice, but that you want to do it in the relaxed environment at home, not nusery.

I only say this because you don't need any more hassle or accusations that you're holding her development back.

But it is clearly up to you, as her parent, to decide when she is ready.

That just sounds so very wrong, Jenk.I hope her school can officially be told to go take a running jump.

DS1 is almost 4.5 and has autism. He will wee on the loo when he feels like it. There is no making him hold it in or use the toilet when he's not interested, though. He'd rather be wet.

jenk - dd1 at almost 6 is still not toilet trained. We tried when she was about 3 - became a nightmare - so we left it for a while. Actively tried when she was about 4 - agian lots of issues.

I thought it was just laziness on her part but the more I watched her - the more I became convinced she just was not getting the messages that her bladder was getting full and she needed to go to the loo. The absolute shock on her face when she wet the undies we put her in told me she had no idea.

I left it - she started mainstream school this year. She is still in pull ups. We have a sort of toilet timing program for her where she will go to the toilet at set times - hopefully trying to catch her doing something in the loo.

Well after almost 5 months - she is starting to tell us when she is wet or dirty. In fact the other day at school - she took herself off three times to the toilet and produced something.

I have not even thought about overnight training - she likes to drink and is a good consumer of fluids ( which does not help) She absolutely soaks pull ups but I am not going back to nappies. Well this morning she woke up dry and went off to the loo first thing.

I thought I was doing the right thing for dd1 trying to train her earlier and now I realise - she just was not physiologically ready. Her body was not getting the messages needed to prompt her to action before now.

I am sick of changing her pull ups - although she is good at changing wet ones - and we have to get to her before she pulls off dirty ones At one stage I had three of them in nappies/pull ups. It was terrible - I felt chained to the change table. Dd2 - basically toilet trained herself whilst I was trying a program with dd1. Dd2 still has the odd accident though. So now I have two in nappies. My 6yo and dd3 at 1yo.

I guess what I am saying after all of that is - if she is not ready - either in her head or her body is not giving her the messages - no matter how hard they try - it is not going to work. I believed that by stepping back and just letting dd1 get it - we may have taken longer to start but will not take as long to actually get there iyswim.

I think your comment - you want her trained BUT not at the expense of added stress and making her totally toilet resistant - is spot on. I would raise it each time. I would contact the paed and ask why he has changed his mind from the original four months. BTW - July would be perfect for the summer break to try things with her. I am taking it slow with dd1 and then a push on our summer holidays too.

We started toilet training Ds1 again last week. He will occasionally ask to go for a wee (and that's with about 10 seconds to spare or when he's actually doing it) usually needs prompting to go and hasn't done any poos on the toilet yet. I'd say he's about halfway there. He will be five in July.
Children on the spectrum train when they are ready, not when other people decide they should be ready.

someone has spoken to our paed and i have a very good idea who it is.
they are bordering on the obsessive when it comes to dd and her toileting and its because of the sendist tribunal hearing in 3 weeks.

i hate that nursery, and i cant stand the senco, who refuses to listen to whatever we say about dd and speaks to us like we are 3 yr olds.
but dd thinks the senco is wonderful.
we shall ask for a meeting with the paed and tell him we HAVE cooperated with nursery over toileting and we do want our daughter trained but that not at the expense of added stress.
i panicked yesterday when we got that letter and had a chat with dd last night, i tried to get her to go on her potty chair, i offered her sweets,pennies for her money box, i sat her dolly on it i offered her stickers,nothing would work, she just said no no potty no knickers.

i wouldnt be surprised if i get a visit from social services next.

I would take it as it comes and when your dd shows she is ready to go rather than to someone else's timetable. I think she is telling you at this stage by words and deeds that she is not prepared to do this. It may be a combination of both - not physiologically and not mentally ready to do it. I am surprised how much more receptive dd1 is to using the toilet - and all that goes with it. I am sure we would have had a lot more issues if I had insisted earlier times when we started.

DH has said he,s had enough of watching me stressed and dd getting upset and is phoning the paed now.
will let you know what he says

jenk - do you personally think she is ready to be toilet trained - even if it is more timing than training iyswim. You know where they go to the toilet at certain times of the day no mattter what - or they go 20 minues after meals or whatever.

If you truly believe she is not ready - I would tell Paed this and tell him all the strategies you have tried and ask him to come up with something that will work if he thinks it is a goer. Otherwise - be strong and say - we will stick to your original plan of 4 months - in the summer when there is less clothing etc to deal with as well.

Be strong!!!!!

i find it hilarious that a paed thinks 4 months is realistic and when speaking to a education official is prepared to change his professional opinion!!!!

on the one hand i think no she,s not ready and especially after yesterday when i tried but on the other if nursrey are saying they think she is ready i dont know.

she has started to ask me to read her potty books to her which i do every night, she tells me that so and so goes on the potty now at nursery and when i say oh does dd want to try like xxxxx she says no dd wants to wear nappies.

It is definitely something for the parent to decide. Just saying that she is a certain age or that she is going to school does not make sense when SN is concerned. People with NT children are always told not to force the issue so why should we? My DS1 is just 4 and we have started training with moderate results so far but we know it will be a long haul. I have 2 in nappies 2 - an NT 16 month so I sympathise with Eidsvold. I have actually started with DS2 as well, I know he is young even for NT training but I am so fed up with funding the Pampers empire!

if she has a loss of sensation, there's very little you could do-that si the reason ds3 isn't trained. Sometimes we can hold him over the potty and he will wee but he has no idea himself that he needs the toilet so will just wet himself unless physically taken.... we refer to this as 'drained not trained'.

it's up to you when you train, the decision to do so needs to take into acocunt home life and other changes that might happen otherwise they'll just set her back (school decided to try for training ds3 on April 7th- the day ds4 was born! Guess what- they gave up rather quickly!)

my dd1 has the huggies pull ups. She did not want to try toileting BUT since she has been at mainstream - since late January - her interest in going to the toilet has skyrocketed. I also bought some undies the other week for dd2 and had bought a bigger size by accident. ( they are dd1's size) She was taken with dd2's undies and when I showed her the other pack that was her size - we talked about undies and if she did a good job of being dry we would work in wearing undies next.

I think it is a lot about their head as well as their body. I wonder if you just kept reading the potty books and talked about xyz at nursery who is going to the potty without talking about her whether when she felt the pressure was off - she might show an interest.

Not sure how your dd is but I know with dd1 the more I push something the more she seems to get anxious and dig her heels in. If I back off and just let it lie - she is more than likely to take it up iyswim. I think sometimes when she is feeling anxious - the anxiety is lessened when she feels the control?!?!?! if you can get that....

Dd1 loved these books:

this one

and

this one has stickers and all

Friend used this one:

here

And like Cyber and Eidsvold having 2 in anppies.... WHY dot hey think we like it that way? bizarre!

If you hate the nursery can she go somewhere else?

As for making her try and use the toilet when she isn't ready, that just sounds cruel to me.

she only has until july to go before she starts school in september.

when i say i hate the nursery i actually mean the senco!
but she is very good and patient with dd and dd loves her, she,s just not so nice with me and dh cos we refuse to be spoken to like a 3 year old and actually have an opinion on our daughter and are not afraid to give it either.

she,s very old school, bossy i know best sort of person, we have had to tell her, remind her of certain things in the SEN code of practice when it comes to dd and she doesnt like that, the worst was when she told us dd would not get any support at school cos she,s not severe enough to meet our lea,s criteria so i replied yes well they said that about ds and 3 tribunals later and he,s in a wonderful independent school for children with an asd.
the look on her face was priceless.
maybe i should keep my mouth shut........................

Never. You have to fight for your child as no one else will.

we had to do this to a degree with our daughter and it is very waring.

Good luck.

dh on the phone to the paed now

jenk - As to shutting up - no way. My dd1 is not in a position to put her point of view forward - we are slowly getting feelings but i believe the day she was born was the day I pledged that I would do whatever was within my power to make sure she would have all she needed in order to achieve her potential - as I would do for dd2 and 3.

It makes me cross that we should not expect to be heard when we are talking about our child.

You know - I remember thinking like you once - I should just keep my mouth shut and not question and not rock the boat. Dd1 ended up back in ICU from the ward post cardiac op. I swore over her little knocked out ventilated intubated body that I would never be silent again - if you can picture a kind of gone with the wind moment I swore I would speak up until I was happy with her care and I would challenge all until I was sure all that needed to be done would be done and most importantly I understood what was being done or not done and why. No treating me like a mushroom. Some professionals respect it and you and others have no idea how to take you and seem to think you are troublesome.

Another time a medical professional was challenging me about knowing everything about down syndrome - I told them that whilst I was very happy to admit not knowing all there was about Down syndrome( which I clearly don't) I had qualified in a PhD in dd1 a long time ago!!!! the medical professional has no response to that - he just looked at me - he had no comeback.

Jenk - sorry for the long messages - just trying to be supportive and share. SO never feel you have to shut your mouth when seeking the best for your children. They can't speak for themselves.

dh spoke to paed for a few minutes, explained that we do want dd toilet trained, that after 4 yrs of changing nappies we are fed up of it.
he said i have been in floods of tears since yesterday.
paed said tell your wife not to worry, i have every confidence in you both as being good parents.
he said we are NOT to force dd to sit on the potty against her will as that will damage the relationship between us and her.
he said he,s not going to write or get in touch with nursery until after dd has seen the psych at camhs next week and see what she also has to say.
but he said that the way forward might be to let nursery have a go at training her and see if they can have any sucess with her,as it is a SN nursery and they are used to children with different SN but we will discuss that when we next see him.

so i feel relieved now, we know the camhs psych well and hope she will give us some answers (she knows what happened over ds not to mess us about) and we are happy that we dont have to try to force her to toilet train against her will.

peachy we started trying to do that with dd1 - some sort of timing BUT she is such a good drinker and had no pattern whatsoever - so could not even know that about 20 minutes after her drink/meal she would need to go. It was a nightmare.

brilliant jenk!!!!!

hope you have a better day.

eids- dh put potty in a draught, which has rather useful effect in making little boys wee LOL... (when i'm on duty, the drain thing only works in the morning though- not sure why)