Do all IEP goals have to be 'academic'? Need toiletting to be a goal

[BakeliteBelle]

DS is 15 and remains doubly incontinent with only a few successful toiletting attempts a month. For some reason, the school does not include toiletting on his IEP.

Although I know the school toilet him regularly, I feel that his incontinence is such a barrier to participation in all sorts of activities that I really want it to be a focus at school as well as at home and respite.

I have just read the SMART guidelines on how IEP's should be written but it seems to refer to academic goals. I personally don't give a toss if DS can count to 10, but I'm really bothered he is incontinent and I think he is as well.

Can I insist the school have goals for toiletting and continence on his IEP? I would like it to be an intensive focus before he reaches adult services

yes, the IEP can be about toiletting.

toiletting has been included on my dc's IEP at 2 different schools. Firstly to do with understanding (when to go/what to do/how to do it!) and latterly to do with compliance.

do you think the school will support you in setting targets for this?

I think the SMART guidelines can mean toileting too.....yes

CanYouBe, I have brought this up time and time again and they just say things like, 'we always toilet him but he never goes at school'. They did - after some persuasion - do a radical toiletting regime, and had him out of nappies for a week, but he never even weed! He just seemed to save it up for home (or the school swimming pool!), so the school felt it was a waste of time.

The trouble is, when they took him on a school residential, they wanted to send him home after one night because they couldn't deal with cleaning up the poo and claimed he had diarrhoea. He always has loose stools from the Movicol and we have to clean him up most nights at home. They just couldn't cope. The respite home struggle with it too.

As an ex-nurse, I am blase about dealing with poo, but these special school staff seem freaked out by it. I would have thought they would get used to it!

you say you get a few successful toileting attempts easch month - these are at home, presumably?

how do you manage that, or is it more a coincidence of timing?

I know what you mean: re saving it up and holding it in - been there done that! What system do you use at home? Does your ds understand the process- he must do, on some level, to be able to hold it in when nappies were ditched last time.

We had to do that cold turkey approach - and it took longer than a week. I think it was about 4 months before we got a successful attempt in the toilet - lots of holding on until desperate and then flooding everywhere... and we didn't have the added poo experience, as held on for night nappies for that. I don't think the school should have given up in a week, since they agreed to the plan

does he drink well?

and what about responding to rewards?

CanYou, he occasionally has success on the toilet at respite too. I think it is down to timing as his poos tend to be evening or night time, so school rarely get them. He knows what he is meant to do on the toilet, he just gets bored sitting there and kicks off so it is difficult to motivate him to sit on despite giving him books and lots of encouragement.

Have been through CAHMS for help, but I really think we are at the point where we will have to go radical and take him out of nappies. The trouble is, he's 15 and despite being sexual, he hasn't properly discovered his willy. I dread removing the nappies in case he starts whipping his willy out all over the place. Life is difficult enough!!!

Drinking is always a problem and my theory is that they have never got him to drink enough at school as he is terribly dry mouthed when he gets home

understand what you mean re: willy access.

I know you want to get the toiletting sorted - but (and have been there on this score) I think you need to get the drinking sorted out first, otherwise your ds willbe able to adjust his need for the toilet by controlling his drinking more.

maybe focus on getting the school to include drinking on the IEP - and then once he is drinking regularly and happily (and hopefully lots), it will be easier to work on weeing in the toilet, as will have more opportunity.

we had the exact same issue - drinking was not a priority, and so there were not enough chances for success in the toilet.

we had to adopt a two-pronged approach -up the liquids (jelly, ice cream, ice lollies, yoghurt, water play, sauce based meals - overcook rice so it is waterlogged etc) so that the need for the toilet is there more, as well as working on getting the wee in the toilet.

if at 15 he hasn't had any prolonged attempts at toilet training (I'm assuming he has SLD rather than 'medical' incontinence) then school are failing him.

NO child with learning difficulties is going to be trained in a week and especially a child who has been in nappies for 15 years!

I work in SS and we are currently helping to toilet train a 13 yr old. It is on his IEP under 'PSHCE' targets.. and it is clearly drawn out how when etc and family and respite are carrying on at home. It is labour intensive and no fun whatsoever..no doubt about that. BUT it is still worth doing.

It sounds that the successes you have had are toilet timing, not toilet training..(training being when he can ask to go, tells you, by whatever means, that he needs to) but being toilet timed if successful, is still a much nicer option than being in adult nappies.

Absolutely agree with you that they should be focussing on independence skills/life skills etc now and not academics.. and yes INSIST that this is the case:)

Thanks for the good advice re drinking and upping fluid before toilet training CanYou. Medusa You could be right about the school failing him but I will talk to them again. I have another problem in that the respite home - though marvellous in many ways - have said they can't have him without nappies as they have carpets...!

He also has some physical disabilities so co-ordinating pants down etc., will always be a problem. I don't envisage him every being able to pull his trousers and pants up so he will always need help.

I feel I need someone to oversee all this and get everyone on board. I want to do it and i know I need to do it but I dread all the work and behaviour battles it will entail.