Anxious mother

[29Ang]

I guess like many here, there is a very long story behind my post. Trying to abreviate it as much as I can. 11yr old son. Starting secondary school September. Has never been able to poo on toilet. ( trauma caused by his dad at potty training calling him dirty etc despite me telling him not too, then other events at home living with an older violent autistic brother) Only poos pants/ pull-ups. For yrs professionals kept saying he'll grow out of it. Was never offered advice what to do despite me asking. No-one seemed to know.Eventually when 8 they started taking it seriously. 2 yrs with CAHMS, still ongoing, no change though. Been round the houses with community peadritian. Telling me he bladder incontinent ( he's not, is scared of toilet flush/ anxieties with toilet) Also told me he's constipated. Gave him laxatives. Wouldn't believe me he's not constipated. I trusted Dr. They wrong. Laxatives made him loose all bowel control. Stopped them after 6 maths. Now has no bowel control. Finally being seen at Evelina children's hospital. Has bowel exercise programme, 3 weeks in, no difference still soiling, no urge to go, no control, doesn't always know he's been. Has MRI September to rule out nerve damage. The secondary school he's due to start. Had a safeguarding meeting with them last term. They didn't realise the extent he soils himself. We discussed HCP, they seemed helpful, but concerned about bullying if peers smell him( understandably, it's a boys school) Now they saying he's not secondary school ready. I'm concerned they'll go to DofE say he / they can't offer the full curriculum and off role him. ( I work in secondary education, yes, they can do that) I'm so worried. It'll effect his whole future. / life. Plus I have to work full time financially. Will loose our home otherwise. Can't home educate. ( Dof E preference) Plus I not able too anyway. Anyone else in this situation??

[Yaleamanda]

Just to say off-rolling is illegal and although schools try to do this they can get into an awful lot of trouble if they do so, get your LA involved and apply for an EHCP. Going to the DfE wont do anything, it is the LA they need to work with. The School SENCO should know all of this. If the school wont apply for an EHCP, make a parental request to the LA and do it yourself.

[Melody3]

Hi, have you tried this book? It worked for us, but my daughter is only 6. The author is on FB if you search for him, and he might be able to offer advice as he went through similar. There is a book like this by the same author for older children but I can’t remember it’s name.

Help! I Poo My Pants - For Boys (British Edition): A story for boys who withhold their poo and soil their pants smile.amazon.co.uk/dp/B088N...

[Melody3 in reply to Melody3]

I’ve found it, it’s this one x

smile.amazon.co.uk/dp/B088B...

[29Ang in reply to Melody3]

Thank you so much. I'll look into it x

[29Ang in reply to Melody3]

I've ordered the book. It looks great. Thank you. Everything including Dr's assume it's caused by constipation. He isn't and has never been. He is too uncomfortable to talk or hear about anything around his poo, but I'm going to read it.

[Melody3 in reply to 29Ang]

It’s a book for your son to to read, it’s written first person by the boy in the story who can’t poo in the toilet. Hope you get somewhere with it!

[29Ang in reply to Melody3]

Hi. Yes, I guessed that. Thank you so much.

[Roxyrox]

I really sympathise with what you are going through, and just want to say well done to you for persevering to get the best for your son. Sorry I have no answers, but from the mother of an 8 year old who soils and withholds, I do know a little about how you feel and it really is the most distressing time. All we want is the best for our children and hats off to you for doing everything you can. Keep fighting for him and things will get better ❤️‍🩹

[29Ang in reply to Roxyrox]

Thank you

[MellyMom]

I have no answers but complete empathy. I an in USA with 10 yr old with mild autism, ADHD, anxiety who will only poo in pullup. Have trued many things to no avail. He just refuses and its horribly stressful. He withholds so we are finally trying laxatives in addition to the Miralax bern using for years. It feels hopeless. I am a divorced Mom who also has special needs 22 yr old. My ♥️ And 🙏🏻 To you.

[29Ang in reply to MellyMom]

Thank you. My son doesn't hold, he has no control. Dr kept telling me it was constipated leak. He's not constipated. Believed Dr at 1st, gave him the laxatives. Was even worse. Detiorated after that. It's all upsetting isn't it. I feel its all hopeless too. ❤

[Tom012]

When my brother was 11 he had big problems with wetting accidents

[Raingoddess]

Hi, we have similar problem. Autistic 11 year old son - goes to high school in September. He has never achieved continence with bladder or bowel and won't talk about it. He won't wear products. We have to go into school to change him as he won't allow anyone else to do it, or engage with it himself. We think he has a problem with Interception (8th sense, most people have never heard of it) as well as psychological trauma from pressure to toilet train. We're working on the Interception stuff (look up Kelly Mahler, she's an OT specialist on Interception). Hope you have got some help? We still need some! He has EHCP so local authority have to provide a school place