Soiling issues

[Tippedmil]

Hi all, I'm in need of help and advice. I have nowhere to turn. I'm at a vulnerable point and I don't want to be judged.

My son is undiagnosed but is showing traits of being on the autistic spectrum. He has been under community paediatric consultant since he was 2 years of age. I'm having issues all the time now with regards incontinence. Yuck I know.

I've asked for advice in the past and many people have said that he may be constipated this isn't the case at all.

My son smears it anywhere in his bedroom, he'll have it everywhere. He puts it on his hands and fingers. I've turned the toileting into a game where the toilet is hungry and thirsty this doesn't work for no 2's.

It's a constant battle as my house is staring to smell and my washing machine is starting to show signs of too much usage. I've tried reward charts, I've tried taking things off him which then result in him physically hurting me. I live on my own, I do not qualify for any help. I have DLA for his care needs. I don't have a social worker- why because on paper I'm doing everything right. He goes to school, he is mainstream no help but has IEP's, he is under a Peadiatrician, he goes to scouts one day a week, he has swimming lessons one day a week, he goes to a childminder for three hours a day Monday- Thursday after school as I am studying. He sees his dad on a friday/Saturday.

He soils mainly when he is in his bedroom when at my house. Normally when he is chilling watching his tablet or playing games. I've tried the reminder of going but this also turns physical. I've tried the "how does it make you feel", "do you like it". "I'm not cross, I want to help you". This too ends up physical. I've tried the "Keep it in theře", the threat of "buying nappies".

I want help and I need help, I don't qualify for help, I want to know how can I get out of this rut? How can I approach it when all I get it physical harm from him? Plus verbal? I can't carry him, he's too heavy and I have a bad back. I can't even lay in my bed because he will come in my room when I've taken his tablet off him and hit, punch and kick me. I have nowhere to hide. Please help me.

[dee11134]

I am sorry to hear that you are managing this all alone.

I suggest you have this same conversation with your GP, you need him or her to know how difficult your situation is. You also need to know if there is a defining diagnosis or whether your child has emotional issues, but either way you need support.

I suggest you also ask your GP to refer to social services, perhaps the added weight of a professional will make them review the case. It sounds like you need help, as does your son. That should be enough. You are going to have to be persistent, but don’t give up. You owe it to both of you to make sure you are not forgotten.

Good luck x

[Tippedmil in reply to dee11134]

Hi I've had 7 referrals to social services made by my GP. All have come back as a child in need & access certain support groups. This included: families first, communities first, Disability Teams Around The Family (DTAF Wales), Barnardoes, Parent nurturing programme. I've accessed all of the above. DTAF, came out and did an assessment. I don't qualify for any additional support because of what is on paper- IEP's school Action Plus Graduated Response Level 2/3, Behavioural Support Teacher Referral done and carried out, closed case and reopened, Ed Psych in school, access to ELSA Support, small group sessions in school. Term time he goes to contact fri/Sat to his dad subject to safeguarding and terms and conditions of contact. Holidays goes to his dad Tues/Wed again subject to terms and conditions of contact that have been set out by my solicitor. Term time Oct-march one day a week for two hours goes out with a Home and Away Project from Student Volunteering Cardiff (SVC) a local charity. Access to disability swimming club every Sunday term time only. Attends local scout group. I'm a qualified nursery nurse with 10 years experience, and I'm currently studying at Cardiff Metropolitan University doing Education, Psychology and Special Educational Needs (BA Hons). I'm an active parent, I have signed up to lots of groups for additional support but as soon as anyone comes and does an assessment at home because of what is on paper at my house I don't qualify. If needed I could have a social worker for contact for his Father if he broke terms and conditions of contact and I report it to the police and have a welfare assessment carried out every time my son went there. This would cause more unnecessary suffering for both myself and my son. I fled DV in Feb 2012, the first community paediatric consultant I sued as he blamed this for my son's behaviour even though he was only 2 years of age at the time. My ex husband is a chronic alcoholic and is verbally aggressive. So I fled I lost my house, job and marriage all on one day.

Also I did a self referral to social services in June 2018, social worker came out and assessed me. However, due to what is on paper yet again I don't qualify for any additional support.

[Robinia]

Sorry to hear that, sounds really stressful. Are you sure he isn’t constipated? Has he had an ultrasound or x Ray? My son used to smear when he was constipated (at a younger age, now 9). When he wasn’t constipated he didn’t do it. From what people have written on here it seems they can be doing nice soft poos and still be constipated. In terms of the physical harm you don’t say how old he is. We were living with a high level of daily violence associated with constipation but following the latest clear out his violence has calmed massively. Of course he may not be constipated at all but in my personal experience it is the cause of my son’s anger and violence (along with the associated pain). Let us know how you get on 🤗

[Tippedmil in reply to Robinia]

No he hasn't had an x-ray. GP won't request one as my son has huge anxieties about anything to do with hospitals, needles, and personal space invasion.

He's back on movical and he hates it. GP represcibed it yesterday. GP also did a referral to OT but she thinks they won't accept it as he got taken off their books in 2016. CAMHS won't accept him either.

[Robinia in reply to Tippedmil]

Oh I feel for you, I really really do. We have had a total nightmare and one thing that is helping us to cope is having an excellent continence nurse who is totally supportive and gets it from my sons point of view. I think even just having one health professional who you feel is “on your side” and listening can help you to cope. I’ve also recently found someone who lives locally whose daughter is in a similar state to my son and talking to her has helped. I guess what I’m saying is although my sons physical problem is no better, worse actually, just having some support is enabling me to parent him without the added stress of fighting for him to get the right support (the continence nurse is coming to his next consultant apptmt) Obvs every child is different and what works for one isn’t necessarily right for another but there is loads of good helpful tips and advice on this site and also the opportunity to feel far less alone. I’m really pleased you are posting and hope it will help you to feel part of the community of supportive people who understand on here 🤗 stay strong and remember you’re a good parent managing in a very difficult situation 💪🏻

[Helen36]

Hello - I don’t really have anything that might help, but just wanted to echo the above that hopefully we can be a supportive community for you here. We know how stressful continence issues are and it sounds like you have so much going on I am not surprised you feel at your wits end. Have you ever spoke to the ERIC helpline? They are amazing specialist continence trained support staff and i think it would be worth a call. I assume you’ve probably already found their website but the helpline might be able to give you some specialist advice based on your son’s additional needs. I also wondered whether any autism support charities might be able to help but I expect you have been down that route.

Like Robina, my first thought was also constipation. So many of us on here would have put our life savings on no constipation only to find months later a blockage in our kiddie’s tum the size of a grapefruit. As an X-ray isn’t an option, have you ever tried a ‘transit time test’? Deny sweetcorn for a week and then get him to eat it and monitor output to see how long it takes. Should be around 24 hours. Could the GP refer you to the local paediatric continence team? Or have you had that already? Even if it is proper constipation, a bit of Movicol prob won’t help so I think you need some specialist advice looking at the continence issues might help.

I also wanted to reassure you that some of what you describe about soiling is completely ‘normal’ for so many of us. The doing in his room when quietly playing and then getting completely enraged - yep - very common. The spreading it about is different, but the other behaviour very common but I would imagine augmented by the autism and all the change you have going on as a family. I know that doesn’t help with any solutions, but hopefully might make you feel better that we all see that too.

The only final thing I wanted to say is that it sounds like you are doing an amazing job in what is an incredibly tough set of circumstances. Unfortunately for you it sounds like the ‘authorities’ can see that too which means you are being left alone. Keep doing your best and keep persevering for help. Xxxxx

[Tippedmil]

Just to update, that my son has an appointment with incontinence service in December 2018. Also I took him to my GP last week. GP represcibed Movicol for him. Wish me luck with the sachets as he doesn't like them at all.

[Robinia]

My son used to like the chocolate movicol. Now he has it with lemon squash in. Other people have posted on here about other ways to disguise the movicol successfully ☺️ If you do add squash, make up the movicol with water first and stir and then add the squash last, it works better