Toileting : Our 7 year old son (awaiting autism... - Mencap

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Toileting

014London
014London

Our 7 year old son (awaiting autism assessment) is still soiling himself everyday and shows no sign of using the toilet. This significantly impacts his stress and behaviours at school and home.

He learned wee control and management at three and has no issues there at all.

Any hints, tips or advice?

27 Replies
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Charlie2750
Charlie2750Community friend

Hello 014London

I am sorry to hear of your problems. He manages wee control so soiling should come later.It might be best to get an assessment from his GP to make sure that medical problems are not an issue. Constipation can cause problems which leads to soiling.Without too much detail a hard stool could be causing a blockage and loose liquid stools are the only stool that can pass the blockage. That is only one issue but if he has not seen a GP make an appointment even during lockdown because doctors are still seeingpeople with problems.

There are specialist nurses that work with adults and children with incontinence problems and you can get an incontinence assessment with one of these nurses. The nurse may also set you up with some pads/pants for free (padded pants such as nappy training pants bought from supermarkets.

The advice I give is from my previous work experience as a district nurse but seek a current professional nurse or GP. Good luck.

Thank you so much for your detailed response and encouragement. We will do as you suggest. Keep safe.

Sorry to hear of your sons plight, It must be very difficult for him, this could be down to emotional issues and him not coping. Is he in mainstream school? This could well be the problem if he’s not coping well there. If you haven’t already had a psychological assessment I think it would be a starting point, but speak to your GP first who would point you in the right direction. Obviously now because of Covid 19 his assessment will be delayed which doesn’t help your situation. It’s difficult and very stressful for you also dealing with this at his age as we know this isn’t the norm. My son had similar problems throughout his life, he was so misunderstood growing up being born in the 70’s, which caused emotional turmoil. He was eventually diagnosed with severe learning disabilities but people never really accepted that in those days. Thankfully things have moved on, I hope you and your son get the support you need.

014London
014London
in reply to 49Twister

Thank you for your advice and support.

I’m in my thirties and disabled and autistic and have no control over my bladder. I’m still in nappies. I don’t have the feeling. I was constantly having accidents the whole of my life and have seen the nurse 13 times to sort out incontinence. I hope this helps.

Your experience is useful for sure Natalie. Has there been anything which helped at all? Or things which definitely didn’t help at all?

I live in a care home and I have to be asked if I want to go to the toilet if going out. From men it can be embarrassing but some ladies don’t mind.

Thank you Natalie.

Otherwise I used to take medication but can sometimes have urgency so can take myself off to the toulet

My autistic son is 5. He also has global development delay. I have tried since 3 to potty train him and he's still in pull ups. His teachers have to check and change him because never says he's done something. Its like he's totally oblivious for the need to go. I have brought it up loads of times with his senco teacher and all I keep been told is there is no point in even trying. Iv got to 'pick my battles' and the toilet issue is one that isn't going to get solved. I don't know whether that's good or bad news 😱

014London
014London
in reply to Mina1979

It sounds as if we are going through the same experience Mina. The messaging from school has changed since the start of year two when we are feeling more pressure at home from school ‘about what we are doing about it’ and fewer staff prepare to change him or support self management clean up. It’s so difficult to know what to do. Thanks for your reply and fingers crossed for us both/all.

Mina1979
Mina1979
in reply to 014London

I have come to the conclusion that there is no point in trying I'm afraid. It just resulted in a massive meltdown. As he is so unaware of what to do. Even his pediatrician said to leave it. However when he first started school the teachers said in special circumstances like this they have to assist with personal hygiene issues which luckily they do. Your sons teachers should be doing the same xxx

014London
014London
in reply to Mina1979

I agree. Thank you for taking the time to contact us.

I suggest lots of prompting and encouraging and reminding to go to the toilet especially at school and taking to the toilet and trying before going out. Pull ups and medication if needed to establish the feeling.

Great suggestions Natalie. Thank you so much.

Thank you Natalie. You have really helped us.

Your welcome

Do you have a portaloo ? It might be less of a challenge.

In the past, he may have experienced getting wet from pressing the flush button while he was still sitting on the toilet or he may not understand what he does not see. Mostly though, he is likely to be scared of falling, so a small seat is a first option if he hasn't one already. Toilets can be very scary until we get used to them just like all running water. Magnesium is a great alternative to constipation, and often what some people are missing.

014London
014London
in reply to Greenroad

Thank you. The smaller toilet seat is a good suggestion.

Hi

My son has global delay and was diagnosed with autism at age 8 .

He too used to soil himself and I was always getting calls from the school to go in and change him or asked what we were doing about it .

We used pull up pants at school which did help but after a referral from the GP we went to see a specialist in bowel and incontinence problems .

It turned out my son had a slow bowel which caused him to have problems with passing faeces .

Sometimes if going to the toilet hurt he would hold onto it and this would cause him to soil himself often .

Children with autism often become fearful of the feeling that going a poo will hurt and can condition themselves to hold on to it .

It took giving my son lactulose every day to soften his faeces and encouragement to sit on the toilet and lots of praise .

I found giving my son a book to look at while he was sitting on the toilet helped .

Also make sure the school are not making too much of a issue of the soiling to your son , if he feels he is being punished or told off because of it he will show that in his behaviour .

The school needs to understand that your son is not doing it on purpose and try to help him and yourselves to find ways to manage this .

The school nurse should be able to put you in touch with a incontinence service that can help you .

My son eventually grew out of soiling but even now at 27 if he gets anxious or distressed it can happen very rarely .

Good luck with everything and please let me know how your son gets on x

Thank you Teachginge. We have just been referred to the incontinence service so hopefully that will help us. Have been worried about lactulose as was concerned that it would make him feel of control. Good to hear that your experience of it was positive. I am understanding that we have to avoid making to much of a fuss about this and to keep the professionals engaged.

It means so much to know that we are not the only ones Going through this.

Thanks so much for your message.

Can I ask you something. We have finally estsblished our son has global development delay. He's 5. Hes also autistic. Trouble is because the global delay overshadows everything there's no way of knowing which autism spectrum hes on. Or maybe hes too young at the moment to tell. Our son hasn't got any social /interactive skills. Doesn't intereact with other children e.g.. Classmates. Very poor sensory issues. Has Speech delay. Can't dress himself/go toilet/undress. Can't read/write. Its like hes missing basic life skills. This is probably a stupid question but does it get any easier 😥 x

014London
014London
in reply to Mina1979

It sounds like we have ‘two of a kind’ Mina. Our boy has started dressing himself In the past month or so - usually as part of a race to see to who can get dressed first. He is also keen to learn the words of some songs and is starting to count and write His names and one, two and the letter words within the last 4/5 months. We used bingo type games as he was strong at pairs and matching games. Our boy had lots of sensory challenges with baths and showers but is starting to manage that better also. He doesn’t interact well with other children and we have asked the school to include this in his EHCP. He really enjoys riding a bike however - and has good balance - bike clubs are a place to mix with other children without pressure on communication and social skills. All of these small steps - in the last year or so Don’t lose heart.

014London
014London
in reply to 014London

But there are days...

We have established that hes not going to cope in mainstream school. Hes in reception and just wants to be shaporoned by a teacher all day and they havent got the time for that which isnt their fault. We are in the process of his EHCP coming together then I can apply for the special school that will meet his needs. Its like my boy has a specific set of skills. Like he can't even begin to learn to read or write. Yet he loves counting and can count to 30!!!!! And does puzzle/matching games on an iPad. He also hates water I cant get him to sit in the bath. Gees it's so refreshing to speak about it to someone about it cos no one else around me has the issues I have xxx

I. May be be hard but try and introduce it as a game its what we did with a family friends little boy and offer a little reward like a chocolate bar at the end to the day

Normally, and as most of the world does, squatting is the preferred position, so maybe you could put a pot in a frame, which he can stand on, and see if he feels easier with that. But the rewards still work with my son, anyway up to a point.