Severe Needs - toileting issues

[Haku33]

Hi I have a 9 year old daughter she is non verbal and has severe needs. She wont wear clothes at all in the house, she also wont wear nappies so she wees and poos/smears in her bedroom or around the house. I have changed all the flooring so it's now all waterproof. But I am worried about puberty etcare there any parents who have been through similar? I have no idea what to do next. My daughter has severe ASD/demand avoidance everything is on her terms and she becomes upset, aggressive etc she has no understanding of the toilet she will sit on the toilet but then continually flushes it. She is on roll at a specialist cscn school but she hasnt attended since September 2024 so she receives no interventions currently just a weekly visit from the class teacher.
Has anyone been through anything similar with toileting, wearing no clothes etc ? Many thanks

On toileting, is DD under the continence service? What about paeds &/or CAMHS? Have you tried lots of different types (e.g. nappies/slips, pull ups, pads, reusables) and brands of products? I have a teen who is incontinent and different types of products and brands can have a different feel to them and a very different fit. Has DD had a sensory OT assessment?

More widely, the EHCP needs reviewing urgently. Is there any therapeutic provision in F currently? Even if DD can’t attend school, the LA is still responsible for ensuring the provision in F is provided and ensuring DD receives a suitable full-time education (or if full-time is not appropriate, as much as is suitable in any form).

Yes she is under the incontinence service who provide pull ups but she wont wear them at all in the house. She will under clothes and she did whilst she was at school.
Normal nappies, pads she wont tolerate at all. She is naked all the time at home.
She was receiving universal support for all and I had requested a OT sensory assessment since Year 1 she is now in Year 4. Anyway she has since had a new needs assessment and she has just been awarded level 7 funding for 2:1 staff but i only heard last week. The issue started in September 2024 when they moved her into a class unsupported with 9 high needs children and 4 unknown adults. She had been with an unfunded 1:1 she loved since reception and she didnt understand why she wasnt with her anymore. They put the 1:1 back with her in December 2024 after I complained but it was too late and the 1:1 left in January 2025 it has snowballed from there. The school blamed me for her non attendance they involved social services behind my back whilst I was attending meetings and making plans with the school to get her back in. They had provided no visuals or anything to help me get her into school it's a really long story and I had to fight a lot to get where we are now. The new EP and OT report state everything she needs support and sensory wise etc and I am just waiting for the new draft. But she wont tolerate wearing anything at home and it worrys me as she gets older.

Has DD tried lots of different brands of pull ups? They have different fits and can feel differently. Continence services can often be reluctant to let people try a wide range of brands.

Is the LA sticking to the timescales for amending the EHCP? Is alternative provision in place in the meantime?

If DD isn’t under a pead &/or CAMHS, request a referral.

Hi no as they tried to stop the pull ups but the alternatives were not suitable so I complained and the pull ups were re instated. They are Tena pants and she will tolerate them when attending school and out of the house. She wont wear anything at home its not to do with the type or style of nappy. No alternative provision is in place and hasnt been at all. I submitted the amended draft on March 5th I guess they have 20 days? They have just agreed the level 7 funding for 2:1 staff who will work with my daughter at home gradually building trust. Getting out the house and eventually back to school. But they have to advertise, find the right staff etc. Surrey rejected the level 7 funding at first and wanted the school to pay for alternative provision however that is getting to know someone else not associated with school. So we fought for the higher funding

Request alternative provision. This should have been put in place a long time ago. On their website, IPSEA has a model letter you can use.

Focus on getting provison detailed, specified and quantified in F of the EHCP rather than the level of funding. If the provision is detailed, specified and quantified in F, it must be provided (lack of staffing or funding are not lawful excuses for not providing it) and can be enforced. If it isn’t is detailed, specified and quantified in F, it doesn’t have to be provided even if the LA promise a certain level of funding and can’t be enforced.

The LA’s deadline isn’t based on when you responded to the draft. If this is following a formal reassessment of needs, the LA must finalise with 14 weeks of agreeing to assess. If it is following an annual review meeting, the LA should have sent the draft within 4 weeks of the meeting then has a further 8 weeks to finalise.

I would take a multi-pronged approach. I would:

• Request to try different brands - I know you don’t think it is this, but just because DD tolerates one brand while out of the house doesn’t mean she can tolerate the same brand all the time.
• Request a referral to CAMHS
• Request a referral to paeds
• Push the LA for alternative provision
• Push the LA to finalise the EHCP (with therapeutic input - SALT, OT (including sensory OT) and MH provision) then appeal if necessary.

Hi we have submitted a referral to camhs/mindworks they had no interest in helping. She has a paediatrician appointment next week.
Thanks for suggesting different nappies but I have tried and the ones she currently has are the thinnest and she will only tolerate pull ups. She will not tolerate pads, slips or traditional nappies. The issue is sensory in the house and hearing her wee hit the floor then stamping in it etc. The incontinence team provided many alternative samples and none were suitable. I have bought potties she will not sit on them or if I get her out for a walk with the pull ups and clothes on as soon as we are home she strips and wees out of her nappy.

I have had the draft legally analysed and assessed they have added everything my daughter needs changed on the EHCP and the OT sensory provision etc everything is legally sorted and if they don't agree i will go to a tribunal but there is so much evidence.

Yes and they should have provided alternate provision along time ago but at that time I had school and social services blaming me for my daughter's non attendance. This made me unwell. I have 3 children with sen to look after. The CWD social worker started 2 weekly visits on the spot day visits because school reported her non attendance as neglect. I had to complain to the Executive Headteacher in May 2025 . Then things changed my daughter was given the adjusted timetable she needed and a 1:1 all good all happy. Then for September 2025 going into Year 4 she had a new teacher who had joined the school she said she would follow the new 1:1s lead. Then on the first day back the 1:1 quit so again my daughter went into another classroom unsupported with 4 unknown adults. The lead TA was not the right fit for my daughter.
They dragged her out the car for 2 weeks, she was wedged under the seat, they pulled her arm so hard she hit herself in the eye. Then my daughter had enough and refused to leave the house at all. We have started going out for walks in the early evening but thats as far as it goes. The rest of the time she hides in a bedding cupboard.
The EP report diagnosed my daughter with EBSNA due to trauma caused from the staff changes etc but its all taken so long.
The school are building a programme for non verbal severe needs children with severe PDA who are out of school to get them back in and my daughter will pilot the programme but it takes time and why the funding has taken so long.
What alternate provision is there for a high needs child the council expect the school to fund it but if They gave my daughter the 2:1 funding ages ago they would have started the plan into school.
my daughter needs a person she trusts thats all.

Before this my now 13 year old was out of education for 3 years due to being attacked on the way home from specialist school in her shared taxi.

I know I have a huge complaint but I am too tired at the moment.

I was just looking to talk to other mums with girls who have severe sensory needs around clothes and how to cope during puberty

Alternative provision can be in whatever form is suitable. There are endless options. SCC won’t tell you this, though. They don’t unless parents force their hand. If you wanted to, you could request the AP and then enforce it if refused or the delayed.

Are you sure school is suitable? It sounds like DD requires EOTAS/EOTIS now.

Did you complain about CAMHS? If not, I would do that. If you did, I would escalate the compliant, including to the ICB if necessary.

DS rather than DD, but I have a teen DS who has complex needs, including being doubly incontinent, having significant sensory needs and not being in a school.

Well she was really happy in reception to Year 2. Loved the unofficial 1:1 but then they moved my daughter into a class without her.
Its all to do with the person supporting her.
We cant get her out the house at all as she thinks I am taking her to school.
The school visit once a week but it isnt consistent.they also dont have the staff which is why they need the funding.

The school and myself made the camhs referral, they called me after a meeting with the school and said we are doing everything we can and to carry on.
This was two weeks ago and I havent had anything official. So I havent complained yet.

I follow her with the pull ups she keeps it on for a few minutes then takes them off. I am worried when she hits puberty and just being isolated at home at the moment.

The trauma response is what makes me think DD needs EOTAS/EOTIS now. That doesn’t mean she can’t ever reintegrate into a school in the future if that is appropriate, she can, although not all with EOTAS/EOTIS will go on to reintegrate.

I would complain to CAMHS. They can provide more support.

AP is the responsibility of the LA, not the school.

Oh ok the school said the AP would come out of there budget and that was the next step but the school then pushed for the level 7 funding which the council.pay and to employ a lead TA and Class TA. The plan is to work with my daughter at home, then going out to fun places soft play, trampoline parks growing a bond building trust with the staff and then start integrating her back into school slowly on an adjusted timetable just fun activities etc.
What would alternative provision look like for a non verbal severe needs child? They would have to start from the home aswell as my daughter hasn't left the house since September.
Everyone is stalling to save money
She will go for walks in her specialist pushchair at night. She refused soft play during half term i showed her visuals of the soft play, photos from the last time she went, I showed her a peppa pig book on soft play, a video from you tube. She knew where we were going but refused.
I will complain to mindworks as they offered no advice or support for her anxiety the school suggested medication but I feel she is to young.

The deadline for the council to send back the EHCP is March 15th

LAs and some school often say alternative provison is the responsibility of the school, but section 19 of the Education Act 1996 means it is ultimately the LA’s responsibility. Though if the EHCP is finalised imminently (and it is sufficient and doesn’t need appealing) then it shouldn’t be necessary at this point, but if you think you might have to appeal the EHCP &/or the LA will breach the timescales and you will need to force their hand to finalise, then it is still worth requesting.

Alternative provision can look like whatever is suitable. There isn’t one way or even one dozen ways it can be provided.

It can start at home with a tutor. By tutor I don’t mean an academic sit down tutor but someone who will undertake child led learning doing whatever DD likes doing. Sensory activities, gaming, baking, crafting, playing with toys, gardening, a company with animals visiting your home, watching TV, looking at magazine (you can get Peppa pig ones), etc. Whatever DD is able to do and would interest her. There possibilities are endless. You can get subscription boxes. Either pre-set ones based on DD’s interests or more personalised ones such as Spectrum Space boxes and LCB Education. It can also include therapeutic provision at home - SALT, OT, some form of MH therapy and physio if necessary.

Then, as DD is gradually able to leave the house, it could include things like soft play or trampolining like you mention but also things like rebound therapy (slightly different to just going to a trampoline park and DD may cope with it better), swimming in a private pool (if a public pool is too much), horse riding, visiting a farm or zoo, museums, cafe, bowling, beach, going to a sensory room… As I said it depends on the individual. Some people have formal AP settings involved, such as a care farm, forest school, gaming AP, sports AP, but not everyone does. It depends on needs.

Going forward with the EHCP, the difference between EOTAS/EOTIS packages and the school providing AP is that there wouldn’t be the association with the school which DD may find traumatic and there wouldn’t be the same pressure to work towards increasing time at school. I also think even if DD is to attend a school in the future, because of her trauma, it won’t be anytime soon, and if DD is to not attend the school, the school shouldn’t be named in section I. Also, if you had direct payments, you would have more control over who worked with DD to make sure they were the right person.

With regards to wearing clothes and pull ups at home, it's tricky, but as with everything that's tricky and refused, I'd start by looking for a link to a special interest/a preferred sensation. It's always about making it fun or a happy/soothing/nice sensation. E.g. if there was a cartoon character she liked, you could play dressing up like them. Or if there is a sensation she likes, she might wear something that feels nice to her - even if it's just a blanket, a poncho, a feather boa etc. If she likes to wee standing up, could she get used to doing it in the shower? Maybe you could start it as a game, splash some water into the shower and stamp onto it, and whenever you see her getting ready to wee, or when you think it's time for it, ask her to come and play the splashing game in the shower, or show her a picture of it and lead her there. I'm so sorry it's so hard. It's definitely always about a relationship with the right person, and experiencing a sudden loss of a 1:1 support worker is traumatic and the replacements sound horrific. Using force is definitely a safeguarding issue. I sometimes stood for hours in the rain waiting and cajoling for my charge to get in or out of a car. But if it takes hours, it takes hours. I would never force someone, and I'd get rightly fired.