Is this normal, do you think

[alfiemama]

Someones posting has just made me think something about my ds that I dont think should be happening.

Ds 4 gets up for school, goes to the toilet. But he has to be constantly reminded to go to the toilet. And has now started to hold it all day. He refuses to go to the toilet and I know he will not go at school.

Yet the school have failed to tell me this. Surely they are aware that he doesnt go to the Loo. And surely its not right to hold it all day.

I think like the other thread mentioned I need to look at getting him statemented or at least an Iep.

What do you all think?

Getting DS2 statemented has been our safety net.

It doesn't sound like he should be holding on all day. Is he drinking fluids whilst at school? Have you spoken to the school? kids (and adults) can be funny about using someone else's toilet.

Hi HelensMelons (your name always makes me giggle)

He drinks a lot to be honest, sometimes drinks to get out of eating.

He wouldnt be able to go to the toilet himself, which school are aware of.

Do (nt) children hold all day, I have heard about no2's being held.

Do we have to apply for a statement or is this something that they will cover at the comm paed appointment.

We are waiting for ed physc to come into school but she has broken her ankle, grrrrrr

My DS1(nt) doesn't hold on. He might hold on for no2 until he gets home from school but it really doesn't bother him. DD3 (nt) was a nightmare to get to use the toilet, particularly for n02's - it's fine now (she's nearly 6). God, what a lovely conversation at tea-time!

DS2 has always been in a special educational unit attached to mainstream so we are lucky, in that, the procedure is always sort of led by the school. DS2 has been seen a couple of times by the Ed Psych. I am not sure whether this will be covered at Comm Paed Appointment. It might be worth mentioning to the school. Hopefully, someone with more wisdom can point you in the right direction for this.

Sorry, for not really being much of a help alfiesmum!

No you have been brilliant Helensmelons.

It just gets me a little cross, that the school havent mentioned that he hasnt been going. I know from conversations with ds and how busting he is, that he hasnt.

Would he ususally go to the toilet alot during the day? My oldest only seems to go for no1 once in the morning ( and has to be persuaded to do this) and once in the evening. He must have the biggest bladder! Depends what is normal for him

Hi Squiz

He has to be coaxed to go to the toilet, its like he forgets, ifykwim. I just think that they should be helping in with it. They know what he is capable off and not.

Ds2 (AS) used to pretty much hold on for the whole day and then wet himself several times in the evening.

Without wanting to sound like a stalker I think your ds has sensory issues/possible ASD doesn't he? If so then it's possible that he doesn't feel as though he needs to go. I can't remember the Paed's exact explanation about my ds2 but basically the signal that the bladder is filling or full doesn't seem to get to the brain.

With ds2 the Paed said to basically tell ds "It's time to go to the toilet" rather than asking him if he needed to go. This should be done at regular intervals (I'm considering getting a timer for this to remind him).

It's possible that the staff haven't noticed. I think they tend to notice the things that children do rather than the things they don't do IYSWIM.

It sounds as though an IEP would be really useful for him, including a strategy for letting ds know that it's time to use the toilet. With some children it can be helpful to show them a card with a picture or symbol of a toilet on it to signal that it's time to go. The cards can also be useful for children who don't like having to ask someone and would rather just show an adult a card as a signal that they need the toilet.

Another possibility is a social story about using the toilet. The SALT wrote one for my ds but you can find sample ideas on the Carol Gray website. Ds2's was a fairly simple one with just a few sentences.

Hi Coppertop

Dont worry stalk away

Yes he is being assessed for Aspergers and Dyspraxia.

He isnt great at going to to the toilet and we still have to hold for him (blush)and say aim fire, go he is adamant when we ask that he doesnt want to go put always does.

I honestly don't think he would go for a teacher like this, they would sit him on (I think, rather than standing. But due to his balance and co-ordiantion probs they would have to manually sit him on.

good idea about the cards and I will have a look at that site. great advice as norm.

I want him to have an Iep, but I am really confused as to who issues them. The school have said he will prob end up with one or a statement, but kind of hinted it was the ed physc who issues them, but she has broken her foot, so there has been a delay there.

Can the Community Pead issue them, sorry very confusing. I just dont want to be waiting patiently when there are things that could have been done.

Just to echo what coppertop said, my DS2 finds it difficult to ask for things so cards might be a really good idea.

The IEP is something that the SENCO can sort out themselves, although they might want the advice of outside agencies.

I don't have experience of the statementing process but this site has information about the basic processes. It's from Surrey but the basic principles and procedures are similar elsewhere.

Thanks Coppertop, I will have a good look at that.

Talk to your local parent partnership, they should be able to support you through the process.

Is there a medical needs team who can support whilst the ep is sick? Is there any way that you can get support via the community paed? They could get a referral to occ health/physio where necessary.

Outside agencies are key in getting a Statement. The decision is made by a panel at County, but reports from an outside agency are key to giving supporting evidence.

Please talk to the senco and ask him/her to explain the system to you.

The SALT will also be able to support - the visual cue cards are very helpful -it may also be something that an autism support team /social and communication team may be able to supply. Sorry to bombard you with teams, but they're not always available in every area so it's good to know where else to refer to.

Hi Bramblebooks.

The Ht said that there are 4 ep in the area and they have said no one can cover her work whilst she is off.

We have a meeting with the comm paed 12th Feb.

Been referred for Salt, had letter saying has been accepted but not been given a date yet.

I think the cue cards are a fantastic idea and think he would poss use them.

I do however feel very let down by the senco of the school. I have patiently been waiting, not harrassing anyone, thinking they must have been doing all that they can. Even though my ds ended up in A & E 4 times and not once was it mentioned that we could do this, or that.

I just hope it doesnt boil down to funding.

rant over, anyhow, I will certainly look into all the teams you have given me, thanks

And all the time needy children and their families are waiting Talk to parent partnership, hopefully they can move things on for you.

I will do, thanks again Bramblebooks.

i haven't read any of the other threads, so apols if missed something vital... does he get any additional help at school already? (in any terms?) has the senco mentioned school action or school action plus to you? are the school already taking outside help or advice to give him extra support? (eg an occupational therapist or SLT?)
i don't know old he is, sorry!
a child who is getting any extra help from school is usually listed on their 'school action' register, and if the school are getting any outside help as above, then the school may put him on the 'school action plus' register. children on either list can have an iep which gives termly or six-monthly targets, and what help the child will be given to help meet them. (these can be social or physical targets as well as academic if appropriate)
dd2 had a target for keeping her head up when using her walking frame, for example, as otherwise she ploughed into people lol.
on the toileting front, ds1 (entirely NT and 7yo) doesn't use the toilet at all unless we/ the teachers bully him. he was having a lot of accidents at school and has been through the paed etc - essentially the staff know that he has to be coerced to go at break time and lunch, and he has go during after-school club. he still wets himself sometimes when he gets home/ on his way home, and has the odd no.2 accident (a leak rather than the full caboodle)...
if your ds isn't having accidents, and isn't getting uti etc, it may just be he isn't drinking enough and so doesn't need to go (coupled with a good storage capacity he may not lol) - of course it isn't a good thing in the long run (loss of sensation etc), and so it's a good idea to try and get school on board with teaching better toilet habits, but it may just be as simple as them ensuring he drinks enough.
you need to be careful not to overcompensate lol, every 3 hours is about 'normal' according to our paed - more often than that and you run the opposite problem of training the bladder to be unable to hold it lol...
paeds can arrange for ultrasound of full and empty bladder (the old pregnancy ultrasound with a wee half way) to check that the bladder is being emptied properly etc...

apols if teaching to suck eggs!

No not at all madwoman

ds is 4.5 and is currently being assessed for Aspergers and dyspraxia. School have referred for ed physc (but she has broke her foot so delayed) and SALT, we have had meeting with senco who said he will prob end up with a statement or at least an iep, but they have never said it is them, that implements this.

my son is good at holding for a long period of time, but I still think they should be encouraging him to go.

I think I am cross, because he has a diary that we use so that we know how he is during school, but it has never been mentioned that he isnt going, also I am patiently waiting for his comm paed to see him in Feb, thinking it will get sorted then, yet they could have done something more about it.

ask school whether he is on school action or school action plus, and if you can see his IEP.... school decide if SA or SA+ and implement an IEP (which you should be involved in, particularly for non academic target setting), and if they are expecting the ed psych to tell them to apply for a statement then they should have him on SA or SA+ already as part of their evidence for the requirement.... sounds like school are just being a bit lazy, but they might have it all in hand and just not have mentioned it.
has he seen the SLT yet?
tbh it probably wouldn't have occurred to school that you would want to know if he had been to the loo or not, unless you had particularly asked... in these circs i would put a note in his home to school diary to the effect that
'dear mrs x, we are monitoring little alfie's bowel and bladder output for two weeks before we see the comm paed as we have some concerns about continence. i would be really grateful if you could mark on the attached sheet when you have taken him to the toilet and what was the outcome (ie bowel movement or emptied bladder). Thank you so much for your help, mrs alfie'

i would then mock up a weekly timetable (in a table lol) with m-f across the top and morning, lunch, and afternoon down the side, and i would provide two, one with this weeks dates pencilled in, and one with next.

if nothing else it will focus their interest lol.

and yes, we have been there before lol, i'd offer to e-mail it, but you can probably do it quicker than swopping addresses

if you can be bothered, you could ask them to monitor his fluid intake too, lol, not in terms of mls, but at least to say if he's had a drink at snack or lunch?

it goes without saying that at all times you must be obsequious and defer to how busy and important they are, and that it is a dreadful imposition, but hopefully will only be for a short period etc etc...

Brilliant Madwoman, sometimes you cant see the wood for the trees. But that will work wonders especially with the paed appointment coming up shortly, thanks.

glad to be of help, good luck x