Would appreciate a bit of support - feeling low re teacher comments and toilet training

[ThomCat]

Sorry to come on and be all low but , well .....

So - Lottie is still in nappies.
Have attempted to talk to her about using the toilet. Sometimes she's really up for it but seems to enjoy sitting on the loo only if she doesn't need to go. If I ask her - "do you need to do a poo?" she'll say no and then she goes in her nappy. If I say to her "have you done a poo?" she says "no" and actually she has. Other times she'll say 'poo, poo,poo' and I put her on the loo and nothing happens. So I'd say she's not ready, right????

I'm planning on really, really making a massive effort to get it sorted over the summer hols. It still won't be easy as she's at a holiday club in the mornings while I work but it's going to be the best chance I get for a while.

However the head teacher called me over in the playground this morning and said "I just wanted a quick word, we had 3 dirty nappies from Charlotte yesterday". I told I was aware as it was written in her report. I thought she was going to say could I adjust her Movicol again as this was too many nappies to have to deal with and I wouldn't have appreciated that but what she said was "Other children are beginning to notice and comment". and

My hormones made me want to scream 'so chuffing what' as I felt defensive and upset but I held back. I also thought 'wtf, they take her to a loo to change a nappy so what are they noticing?' but didn't really say anything as I thought I was going to get really angry and lose it or burst into tears. She then asked was I trying to toilet train her.

I replied we talk about the loo, had potties in every room and so on but expalined what I've just told you lot about her saying no when I ask etc.

I then went on to say that I don't want my 5.5 yr old in nappies, that come Sept I'll have 3 childrens nappies to change, that I plan to really try and crack it over the summer hols but unless they are prepapred for me to send her in with no nappy and they contend with the accidents what can I do?'

She was all "Ohhh yes I'm really just thinking of you" which is bollcks (or is that my hormones talking?).

I just felt really upset that becasue they had to change 3 nappies yesterday and 'other children are commenting' that therefore she's ready to toilet train. What am I supposed to do when i really don't think she is and it's only a few weeks till she breaks up? I didn't appreciate the morning/playground chat about it and the presumption that I'm not doing anything, even though we dicussed TT at her open evening.

Oh rant, rant, rant.

Point is - what can I do?
If I have it right it's impossible to toilet train a child who isn't ready, right???

How did you girls go about it?

TC x

So sorry about long post

Bit insensitive.
Do you have a specialist nurse who can help you out?
The nurses we work with are great at supporting families with SN to work on this.

Admittedly, it probably helps that the children I work with are in special schools where lots of staff to focus on this and often loo off the classroom.

Oh dear the problems with mainstreaming. I KNOW that children can benefit but this sort of thing needs to be sorted. HOW will maintream schools deal with this sort of issue (which wouldn't be an issue at all in special school btw). It's not FAIR that because of inclusion suddenly the fact that a 5 year old with learning difficulties isn't toilet trained becomes a bloody issue. It shouldn't be. It will be harder for her because of her bowel problems as well. I know children with bowel problems with no learning difficulties who are struggling.

You are doing all the right things. With ds1 we sat him on the toilet and just kept him there, sometimes it caught a wee/poo and suddenly overnight he got it. I was in ds1's school talking to the teacher about toilet training and she said in her experience with children with learning difficulties it will just suddenly click.

this might be of use to you Also there's a book about toilet training children with autism, but it is useful for LD's as well.

Thanks so much. It's moments like this that I really don't know what I'd do without MN. I feel so deadfully low and teary and alone and then there is MN and I feel better and realise I'm not alone at all.

Gess - as I sobbed driving away from school I was having imaginery conversations with the teacher where I told her I'd just remove Lottie from the school. It's there int he back of my mind ready to be pulled out when I feel it's not working. I'll wait and see how she / we / they cope with the huge jump from reception into year 1 and then discuss it with DP etc.

Anyway for now thanks for the support and link.

aaargh TC, I'm sorry, it sounds like a crappy situation really (no pun intended). I don't think there's much you can actively do other than what you are doing already, although I second md's suggestion about getting help from a specialist nurse at the CDC.

I know this can be a real problem - our school appeared cool about it and didn't bat an eyelid really, but then dd2 potty trained herself in the May before she was due to start reception so they were never actually put to the test, IYSWIM.
The head sounds like an arse and I hope she gets over this - but really, when Lottie's school advertise for a TA they should include this in the job spec, and hopefully they'll get someone who has changed plenty of dirty nappies before and doesn't think it's a big deal. As for the other children noticing - well yes, they will, but hopefully with an attentive TA she'll get cleaned up quickly, and children do take this kind of stuff in their stride - there'll be plenty of children there with younger siblings in nappies, who won't consider it a big deal.

(With dd2 - she just suddenly got the idea really. Obviously there was lots of cheering etc. and she got so into it that at first she'd rush to the loo every 15 minutes to squeeze out a wee. I didn't do anything special.)

So this specialist nurse - where do I find her??!! Who do I ask, this is a new one to me.

ring the CDC and ask whether they have a specialist nurse who deals with behavioural issues, potty training etc.

gess, have you got a link to the book for toilet training children with an ASD?
thanks
jenx

Are there any books that you guys found particulaly useful, or wish you had had at hand? Maybe more for you DC than you?

This makes me soooooo mad, so I appologise for getting up on my soapbox.
The link Guss has is my fav for pointing out good policy. Try here for some advice I found useful when thinking about toilet training program.
Do you have free nappies? we do and I've found that the continence nurse who came out to assess us for those was able to offer good advice.
How big is your 5.5yr old? my ds is 5 & too big to be comfy on a potty so we are working on sitting on the toilet.
Makes my blood boil when people suggest that the reason a child with sn isn't toilet trained is due to parenting, some people really have no idea. I have always believed that it's very very hard to toilet train a child who is not ready. DD who doesn't have sn was 2 when she decided to give it a go and got it really quickly. Ds is developmentally somewhere between 18months &2years, so although he is now interested in fleetingly sitting on the tiolet, I think it's going to be a long slow road to get him out of nappies.

You have my every sympathy though, & although hormones might have made you a bit more sensitive, you are right to be so upset and frustrated by the school. Perhaps they need to think about how they explain (if it's any of the other children's busines) your DD's dirty nappies to the others in a sensitive manner.....though sounds as though sensitive isn't really their forte.
Three in nappies wasn't as bad as it sounds for us- plus it was only 2 during the day when DS was at school so someone else was doing his!
Sorry, did warn you it might be a rant!
Good luck with it all,

I've added 2 books to the resources page Scroll right to the bottom- I used the top one of the two- excellent guide; the second one hasn't been published yet and I would assume is similar.

Oh TC, sorry you are going through this honey!!I am having major issues still at school, basically Amelia isn't getting any support in school until she starts Y1 in September and toileting started off as being a really BIG issue. I would often come home from school with my bags and bags of wet clothes, and just cry my eyes out. I know it is different for us as Amelia is dry for us at home, and has been for well over a year, but that made it even more frustrating feeling the school were not giving her the help she obviously needed. Things aren't great now, she astill wets every now and then, but improved dramatically.
We don't have as many bowel issues from what I remember. Amelia swings from being constipated to having a bout of diarrhoea every now and then, which was affecting her schooling. We have recently seen a dietician and at the moment just upping her fluids.
It's a big enough hurdle getting a child with SN toilet trained, but trying to deal with attitudes of eductional staff as well...well I need say no more.

I am thinking back to when we started with Amelia and what a long, hard slog it was, from what I remember we started "potty training" when she was about 2.5 and she cracked it early last year - that made her about 4.5...so it took about 2 years. We were lucky enough that she took to the potty quite happily and understood it's purpose quickly. I don't know if I did the right thing but at one stage I didn't give her the chance to soil herself, I put a little pair of knickers on her, made a big issue of big girls knickers (tesco do some about £1.50 for 5 pairs and I just used to throw them away at times!)then I even set the alarm on my mobile phone to go off every 10-15 minutes. Obviously big rewards when sucessful. Slowly I increased this to 20 minutes, then 25.....I was frightened that by doing this I wasn't giving her the chance to feel the need to go herself, but luckily it did work for us.
As for the specialist, your Learning Disability team, school nurse, paeditrician should be able to give you details of your local continence services and hopefully they will be able to help out.

Anyway, I've waffled on enough honey, it's been a long time since I have been around on here, so I will say my congratulations now!! Take care of yourself and chin up!!

Thanks Joggeroo

She is quite a small 5.5 yr old. She only started to learn to walk in December really and is still quite unsteady and stiff legged. She is also hypermobile esp in her hip joints and can't undress herself still. She is totally unaware or seems to be of a full bladder. She does sometimes tell me she needs a poo even though it doesn't always turn out that way. She's been on Movicol for about 6 months or so, maybe a bit more. Until then she went about once a week and it was distressing and painful. There was no way I could have potty trined a girl who was so badly constipated plus the fact she held onto it and was scared of it so wouldn't tell me anyway. Movicol has helped and now she is more regular (still hard to predict her bowel movements) I can start to think about TT and my plan has always been to try during the summer hols. There are still many things that cause me to think she might not be ready but I'm still going to give it a good shot.

I have written the teachers a letter and printed off that link you put on your site Gess and turned it to the page where it says 'it is not helpful to assume the child has failed to acheive contience becasue the parent hasn't bothered to try. There are very few parents for whom this would be true.'!

Hi Dingle. Love the alarm tip and will definitley use this, thanks so much for the tip and the support in general -

Gess - thanks for books link, x

I agree with the toilet issue over the potty, Amelia is quite tall and I think she felt insecure on a potty. It made it a mad dash upstairs but it did save thetransition from potty to toilet afterwards.

I did use large laminated cards with a pic of a toilet on them, just as prompts/reminders...perhaps you could stick some velcro pads on them and implement a reward system. Perhaps let her choose a reward to aim for when she sucessfully uses the potty/toilet. For example I'd say, first you go wee/poo.....then we can do playdough...play ball....bubbles.

Sorry, it doesn't help with the bowel issues does it!!!

Agree with Fio (as always). It's something that is never considered wrt mainstreaming- who is going to deal with the toiletting & it's such a huge omission. It really shouldn't be your concern; as Fio says you are trainer her at home, they have to deal with it at school. They should be helping you- not demading the impossible.

I saw a long lost friend yesterday- she used to be ds1's private SALT, and she started sniggering about the time his mainstream school had asked me to "sit ds1 down and explain that pinching hurts". I think this is similar to be honest. So inappropriate it's hard to know where to begin.

ONe Friday afternoon I was called into Amelia's classroom for the teacher to have a quiert word!!! "We think Amelia might have some sort of infection!! She has wet herself 3/4 times today!!!!!!!"

Friday evening - DRY, Saturday - DRY, Sunday - DRY....Hmmmmm infection seems to have myseriously cleared up.

Yes, she does have a problem, but it's not the infection...it's the care and support issue!!!

Sending {{{{{{{{{{{hugs}}}}}}}}}}}}

fio- I was livid- with steam coming out of my ears. It was a Friday night message in a home school contact book. Next morning still livid. OUr SALT arrived to work with ds1; I showed her the book; she read it, threw her head back and howled with laughter until she had tears streaming down her face then said "they're just not getting it are they?"

I sent back a very long reply about why I couldn't sit down and explain to him that pinching hurts. The reply? 'OK'

Inclusion my backside.

Thomcat- my son is 5 an dstill in nappies and has anxiety issues with using the toilets at school and at home.

I have been advised by a paediatrician to give him movicol as they suspect he has constipation.
they think he does'nt know when he needs to go.
I am constantly changing him at home.

Like your daughter my DS will say he does'nt need to go and then does it in his nappy.

I was assigned a specialist who came to a meeting with myself and DS's teacher and her suggestion was to over the weekend tell him there was no more nappies and force him to wear pants then on Monday take him to school in pants and deny him the nappies.
No way was I going to do that,he has hihgh anxiety issues as it is and this would just be totally the wrong thing to do.
The teacher and the speciallist? also sat their discussing how their own children were potty trained by 3.
Whoppee,well done them.
I hasten to add that there children had no SN and that I thought DS's toileting issues were liked to his SN.

It was like banging my head againest a brick wall.

I know how you must have felt when that head teacher approached you,totally in appropriate to discuss this with you in the playground in the first place.
Iremember coming away from my meeting feeling like a useless mother and they made me feel I was letting my DS down.

Sorry for ranting ,not been too much help just wanted to let you know you are not alone.
Will be watching this thread for ideas myself.

Hope everything gets sorted for you and your daughter.

totaly understand TC, dunno if you've read the 'shit' no pun intended that i'm going thru at the mo. That said, we have a totally brill paed incontinence nurse in london now, where are you based?

Thansk everyone.

MABS - no I haven't - whats up? Oh and we're just outside London, Pinner near Harrow / Wembley - that neck of the woods.

The teacher did start to back track and talk about how whatever I'm doing at home they will do in school so we use the same words / language and the so on. However, I'm sorry but you don't open a conversation like this , in the playground, by saying 'I wanted a quick word we had 3 dirty nappies yesterday, 3, and other children are beginning to comment'. Everything she said from then on all I heard was ohhh what a pain in the arse we have to change so many nappies, it's not on really and it's akward for us when other children comment'. Well how are they commenting? How do they know? Is it becasue the teachers are making a fuss that she's been? It better not be but I've asked the question.

In fact - sorry to be dull but here's the letter I'm sending with a printed copy of the link Gess gave me and some other stuff I printed off the internet.

RE - This mornings playground conversation regarding Charlotte having three dirty nappies yesterday, other children commenting and toilet training her.

Firstly I am really upset that other children are commenting. I?m not sure what the comments are and what effect Charlotte not yet being toilet trained is having on the other children and in turn what effect this is having on her relationship with her peers. However I would guess that a dirty nappy is easier to deal with than a dirty pair of pants / dress / chair / floor which is what would happen if I tried to toilet train her during school time. Therefore, unfortunately I really don?t see what I can do about this at this present moment.
I would be interested in understanding more about the children?s comments and what the procedure is once Charlotte has had a bowel movement in the classroom setting. I would hope that she is quietly taken from the class and changed in the toilet with the minimum amount of fuss and attention possible.

As for having three dirty nappies in one day, again, I?m really sorry about this, but it?s really out of my control. I?m sure there are some days when there are no soiled nappies to change. I know it?s not pleasant and wish is wasn?t the case, but unless I use Movicol on and off I?m never going to be able to get her to have any sort of regular bowel movement. If I was to stop I?ll be taking 3 steps back and delay toilet training even more. When she wasn?t on Movicol she was having a bowel movement approximately once a week and it was painful and frightening for her. This is not conducive with toilet training. To even think about training her I first had to try and sort out her constipation issues and this is the closest I?ve ever come, even if it?s not perfect. She has only been taking Movicol for around 6 months and only been walking around the same time. Both issues were important to overcome before full continence could be addressed.

It should go without saying that I want Charlotte to be toilet trained but I really don?t know what I can do at the end of a school term and if I was to start now there would be hundreds of accidents. My plan was to concentrate on this over the summer holidays.
In many ways I still don?t think Charlotte is truly ready, and I have attached notes on toilet training a child with special needs and highlighted my worries to help explain why I think this. All I can do is try. If we don?t have success I?m afraid to say there really is nothing I can do about it. As with her walking, it?s Charlotte?s decision to make and as with all children, for toilet training to be successful the child herself has to be totally ready. That said I am still going to be giving this my best shot as I don?t want her to be in Year 1 and still in nappies and as of September I shall have three children to change!

So to close, please rest assured that we very much want Charlotte to come out of nappies and will be going ahead with our plans to assist Charlotte with this during the summer. We very much hope and pray for success however if this is not the case, we may need to have a meeting in September to discuss how best togehter we help Charlotte and take outside assistance in this matter.

oh and I meant to say to loveontherocks - thanks for your post. It does help to know I'm not alone but sorry you, any of us, have to put up with this crap (sorry, no pun intended once again!)

TC- ds has now been diagnosed with neuropthis baldder and bowel and is being taught how to self catheterise 5/6 times per day. We go to the Evalina Childrens hospital (St Thomas'), Anne Wright is a brilliant consultant there.