Some advice please on bottom wiping

[claw3]

Hi everyone

My 5 year old son has Sensory Modulation Disorder and is unable to feel the necessary sensation that his bowels are full i.e. he goes rushing to the toilet at the very last minute (when he finally feels something i.e. he has already started to go) this ALWAYS results in him having faeces in his trousers and around his bottom. He also has tactile dysfunction and dislikes wiping his bottom, he is uncomfortable with the feeling of rubbing toilet paper on his bottom; he does attempt to wipe his bottom, but he is always in a mess and does it very badly.

He started school in January and the school are just leaving him to it, their approach is that he will just have to learn to do it.

Does anyone else have a similar problem and should the school be more helpful,your thoughts please?

silly question, but has he tried wet wipes

We have wet wipes at home, although he finds these more comfortable, the job isnt done any better.

On the advice of the OT, i havent said anything to the school. Her feelings were to let him start school and just see how he coped first.

On reflection this is probably really bad advice and im feeling guilty now. When he returns to school in September i would like to approach the school about this problem, but im not quite sure what to suggest.

He is really embarassed about the fact he messes himself and doesnt tell anyone when he does.

Hi

Sorry you're having this problem. I have been through something similar.

DS (6 possible AS) was late to 'toilet training' and when he was dry always left things to the last moment.

He had the odd accident at home but I didn't think it was worth mentioning to school. He started to have accidents when he started - like your son it was often the case that he'd slightly soiled himself and couldn't clean himself. Not often but it happened 3 or 4 times.

His teacher was very reassuring and told me not to worry but he was sent home one day when his teacher was off after he had soiled his pants and I knew I had to do something.

My HV put me in touch with the school nurse who was really used to dealing with these issues. We had a meeting with the head and she basically drew up a plan for what should happen. It included named people prepared to help him clean himself and me supplying wipes and clean pants. It really worked.

DS still finds it difficult to wipe himself as he has coordination difficulties but he has (miraculously) developed a system for doing number 2s only at home . Don't know how he does it but it works

So you're not alone and my advice is contact the school nurse for a chat and get advice about how to manage this to stop you both worrying

Morning Debs, thanks for replying, its reassuring that you have encountered this and that the school were prepared to help.

At home, i only know he has soiled himself because he has changed his trousers (and i can usually smell it) but if i ask him why he has changed, he will make up some excuse ie he didnt like the colour of his trousers etc. I then find his soiled trousers 'hidden' usually behind the door in his room.

My concerns are that it must be very uncomfortable for him,having to spend the day in soiled trousers. Secondly that he smells and the children will pick up on it, they already call him 'weirdo' . If he doesnt tell anyone, then they cant help him.

The school are not very sympathetic. My son is oral defensive and has real problems brushing his teeth etc, this has affected his teeth very badly (he is going into hospital on the 18th Sept to have 6 removed) and my dentist suggested that he chew gum for 10 minutes after every meal and gave me a letter for the school. They refused!

That is awful! Do get the school nurse involved. That does help to focus their minds! She is an independent medical person. You could speak to your GP too.

If they are being really unhelpful, would you think about moving? It feels like it's the worst thing in the world to do but my son moved during the first term of Year 1 and has never looked back.

Have you got SENCO involved? They appear to be failing your son and I think you need to get the relevant people involved.

I have never thought about changing schools, he only started in January and starting from square one again is pretty daunting! (but an option i will bear in mind)

He is on the special needs action plus register, but has no IEP in place YET, this is something i will push for. All the advice i have been receiving from OT is 'to leave him to settle in, we dont want to make it sound like he is a child with lots of problems'!!

The OT asked me to leave it to her, she has been going into school since January to help him settle in and advise staff. Although the school informed me on parents evening in June, that the OT hasnt been into school for some time. Despite numerous phone calls since June, she hasnt returned any of my calls.

The school/SENCO are telling me he has settled in extremely well and there is no need for an IEP. He comes home smothered and smelling of poo most days, he doesnt eat or drink at lunch time most days. He has been bitten twice, hit in the face with a stick, had his lunch taken off of him by another child. He tells me he gets hit most days. Other kids call him weirdo. He refuses to join in with messy play or cooking. He reverses words ie no is on etc, he has no concept of opposites ie hot - cold and a few other potential learning difficulties. But, because he is very passive and doesnt hit other children, he has settled in 'extremely well'!!

Claw3 I don't want to make things worse for you but I really think this sounds very wrong and that your son is not getting the support or care that he requires. No child should arrive home in that state it is degrading.

How would you feel about making an appointment with the head? You should speak to the school nurse first and explain what is happening and get advice. This is a 'whole school' issue as it touches on how they handle SEN.

The nurse should come with you or at least see the head.

I really would think about another school too. This is awful but I think it all happens so incrementally that you kind of lose perspective on what is good and bad and teachers have a way of makiing you feel that you're overreacting.

You don't want to label your son as having 'lots of problems' but he does have needs and he isn't getting them met

hello claw havent seen you on for ages

i would have to second the fact they are not offering him enough support for his needs you really need to have a meeting and get some IEP's in place he does have needs that need dealing with and byt he sounds of it they have not got the right attitude at the school to help him

ask there policy on children with special needs
could you apply for a statement at all?

i personally would go in and threaten to report them for neglecting your childs needs as he is now being bullied and its not being dealt with correctly maybe contact LEA and ask them for some advise

i cant see how you can be on action plus with no action i would personally not be very happy and would have that senco draw up action in front of me if not i would report them for neglecting your childs needs

The first time he used the toilet in school, he asked for help to wipe his bottom. The teacher told him in school he has to wipe his own bottom and left him crying in the toilet for 15 minutes. She actually told me this and was disgusted to hear that at home i help him.

I had mentioned to the OT that he soiled his trousers and got into a mess. She told me he would have to learn to do it himself.

Over the holidays i have been doing lots of reading about his disorder and found out that his Internal Regulation (The Interoceptive Sense)may be affected and that he isnt so much 'lazy' but unable to feel the sensation, something the OT failed to mention.

This would also explain why he doesnt eat or drink most days without prompting, or other days is constantly hungry or thirsty. He is unable to regulate his appetite. Something else she failed to mention.

Also one day he doesnt want to be touched, next day, he is hugging everyone.

Because his behaviour is conflicting, the school seem to think they have a spoilt child on their hands and its my fault.

I have started to write down exactly what his problems are (using a sensory checklist) and what dysfunction causes them and i was going to give a copy to the SENCO, what do you think?

I feel like i am having to tell the school he has problems which is enforcing their 'overprotective mother' views

if you actually have formal dx why dont you just apply for statement of special need even if he only got minimal hours it would be written down legally what they would have to do i don't know if you can apply for statement with out dx im sure you could as you have to supply all professionals involved who will clarify his needs etc may be well worth you doing this

the school sounds crap to be honest scuse my language but bubbla boy will start school and they have all bent over backwards meetings with senco action plan put in place etc iep's being set up

maybe doa personal passport as i did for bubbla boy so it has all his needs written in his words what he doesnt like and why what he needs help with etc so they can understand how he feels if all else fails then that school isnt right for him

with bubbla boy we have one page about me so h=just if has pets lives with mum and dad if has siblings
page 2 communication so any words etc he may use and what they really mean the fact people need to be patient any problems why how he feels what they need to do to help
page 3 likes an dislikes so could dislike the fact no one helps and takes his needs seriously left to struggle sensitivities etc
page 4 was diet
page 5 toileting needs etc

this could be useful for you to do as it would show all his needs in writing and you could use this if they dont take notice you could lodge complaint that they are doing nothing to help his needs at all

you cant have action plus with no action which should be in form of IEP so what dot hey do on action plus they sound so wrong for your ds

im sorry its so hard for you it really shouldnt be and they should be doing more

maybe ask how many other children with sn they deal with they may have no real knowledge at all in that case his in wrong school

Hi there bubba hows things? Sorry long post!

They do have totally the wrong attitude, one day it was snowing, he was really anxious about the snow touching his face and we sheltered from it in the school corridor. We saw his teacher and i whispered to her why we were in the school building. She turned to my son and said 'you had better get used to it, you will have to go out in it later!!

I have been advised by the SENCO that a statement is extremely unlikely.

He is on action plus, because he is supposed to get outside help ie OT, Dietician, SALT etc.

I was thinking of doing something along these lines ie listing dysfunction, then how it affects his behaviour. Example

Vestibular Dysfunction

Hyposensitivity to Movement - Under-Responsive (he craves it):

Vestibular Sense: input from the inner ear about equilibrium, gravitational changes, movement experiences, and position in space.

He can't seem to stand/sit still; he has to be moving constantly. He is always hanging upside down, standing on his head, doing head over heels, dancing etc.

He craves fast, spinning, and/or intense movement experiences.

He loves the fast, intense, and/or scary rides at amusement parks.

He is a "thrill-seeker"; dangerous at times, he has no fear of heights or falling. He climbs too high, jumps from furniture and places of height, hangs upside down and falls intentionally. He has had stitches in his face from falling, he has also knocked his mouth so many times he has killed the nerves in his 2 front teeth and they turned black. He has since had to have 1 of the teeth removed after he developed an abscess.

He is always running, jumping, hopping etc. instead of walking.

He likes sudden or quick movements, such as, going over a big bump in the car or on a bike.

He has difficulty calming down at bedtime and needs excessive help to get to sleep. He wakes up several times during the night and wants to stand on his head etc.

Hypersensitivity to Movement - Over-Responsive (he avoids it):

Avoids/dislikes elevators and escalators; he feels off balance and can actually get motion sickness from them.

Although he seeks out fast, spinning, and/or intense movement experiences spinning activities i.e. rotary movement roundabouts, tyre swings, amusement park rides or head over heels etc he is often unable to tolerate it and feels sick/is sick. I often have to stop the rides as he looks like he is about to pass out and is often sick.

He dislikes being tipped backwards i.e. being laid back in a dentist chair or tipping his head backwards to have his hair washed makes him feel sick.

His problems run to about 14 pages, with medical history, diet etc.

What do you think, am i trying to sound too technical, a wannabe expert?

Sorry Bubba, long post crossed posted.

He has no formal dx and never will have as SMD is not recognised as a dx in this Country, only in America.

well i would seriously consider applying for statement

here

you can also look a round for other school as you can list a school you want your ds to go to and why it sound slike your school has no action action plus should have IEP for all his needs how they or who ever will deal with it how often so basically he has no action plus there fore he warrants more help maybe school dont want you to apply as its legally binding etc and they are just not the right school to offer the correct help a good school would have childs best interest at heart not dismiss needs

maybe a complaint is what is needed you have been nice and tried to deal with it nicely and there just not doing what they should

Thanks i have bookmarked the link, will have a read later.

The problem i have, is that i dont have any experts to back me up. Although we have been seeing Paeds since he was 18 months old, we have never seen the same one twice.

The OT who 'diagnosed' him doesnt seem to understand SMD and make the links to his behaviour and it appears she has now done a runner!

He has needed SALT since he was 2, but hasnt received any treatment.

He was referred to SALT for an autism check 6 months ago, but i have heard nothing and Paed who referred has left and not sent a follow up appointment.

We have recently been referred back to Dietitian again, but we have only had 2 appointments so far.

Banging head against wall, springs to mind!

Sorry im having a right old moan.

oh claw its not god enough is it it seems like you both have not been treated fairly at all i would rant to who ever you can to get some answers as this is not fair on your ds or yourself

We have been referred off into different directions for years now and have been going in circles. I feel a bit let down and deflated to be honest slaps face and pulls self together enough of my self pity.

So do what do you think of my list dysfunction and behaviour plan, (i feel his behaviour isnt being linked to a dysfunction and he is being labelled lazy, spoilt etc) be brutally honest?

I would like to give it to SENCO, then ask what they plan to do.

i think you have done the right thing there you know your child and triggers and people who have no idea what there dealing with normally act in ignorance so its easier to say lazy as they have no knowledge so i think what you have done is great and i would insist on some IEP's being drawn up otherwise there obviously is no action plus in place as there doing naff all

its ok to feel deflated i would too if i was you just need to keep fighting for what you know he deserves you will get it and also pressurise professionals into giving more answers what's your gp like? could you get letters for school from gp regarding his needs?

do you get DLA for your ds is there any way you could privately get something in writing?

i forget did you live near me? anyway were doing well this end thank you if you ever want to talk my e mail is sylv_ 25 at hotmail dot co dot uk im on holiday from 29th to 5th but can always reply when get home just if you want someone to talk with dont see you on here much any more xx

My GP has never been involved in referrals, it was all HV, so she has limited knowledge of his problems. I once approached my GP about my son's anemia ie no one was keeping a check on it, he had been having repeat prescriptions for 2 years for medication.

When i told her it was due to his disorder and extremely limited diet. Her advice was not to worry he would grow out of it!

I have applied for DLA and have been turned down twice now. I am currently waiting to hear on 3rd appeal.

I am seriously considering getting a private opinion, where i will get the money from i have no idea. I think i may have to get a loan.

thats what i was thinking with the DLA so lets hope you win and get it and that money can be used for private therapy dx etc

it could be worth you asking to see another gp and go in and just let it all out and see what someone else can offer you

good luck with it all makes me mad when i hear of others having so much trouble we had to fight for everything but not as hard as your having to

Thank you very much Bubba for your email address and offer of support, its much appreciated.

I havent been on much lately, we had to move house because of the garden (10ft drop with fencing from one level to another and a little thrill seeker, just didnt mix!)

I will draw up my plan and give a copy to everyone who is involved with ds, as no one seems to realise the extent of his problems. I have been relying on professionals to do this and its just not materialising.

I spend 4 hours getting him to sleep every night, he doesnt go to sleep until after 1am most nights, then a further 3 hours getting him back to sleep every night. I need help and coffee!

If i emailed you what i have drafted, would you mind taking a look and giving me some feedback? I realise you have your hands full too and wont be at all offended if you dont have the time.

oh honestly things this end are running smooth and calm at the moment id be more than happy to help you your one of the first people i met on here few years back i have all the time for you honestly e mail me whenever you feel you want to as i say im on holiday sat till sat but more than happy to have chat via e mail etc

Thank you again, you always seem to have things running smoothly and offer good advice, i envy you!

All hell has broken loose this end, my previously passive, intelligent little boy, spends all day wanting to stand on his head, throwing tantrums at the slightest thing, hitting his brothers with objects and talking endlessly about things which make no sense at all to name but a few

Where are you off to for your hols?

Oh i live in Kent by the way (answer to previous question) coffee isnt working yet!

lol don't be envious im good at looking calm and cool but beleive me its not always the real case ive made myself ill with worry lost my hair just taking new focus on life but it is helped by the fact ds is being an angel and giving me no cause to be stressed at the moment but i have my moments

oh your not so far away from us about an hr i think

were off to lowestoft for our hols all last min as dp couldn't get time off work for our annual holiday as we would normally go sept as his work mates with kids get aug but as bubbla boy starts school we couldn't do it so i booked lowestoft as i know it so well dp will be with us sat till mon then he'll come home and then pick us up following sat i'm just looking forward to the break to be honest as i haven't always felt so clam and things haven't always run smooth just are at the moment but still need to get away and clear my head from it all lol