DS9 ASD toileting issues - zero help and just don’t know what to do anymore

[Rinoachicken]

Reposting for traffic as SEN board so quiet.

DS9 is suspected ASD - has an EHCP and currently fighting to get him out of mainstream into specialist. He is a bright boy, severely dyslexic, can be happy and chatty, but when things are stressful for him or he’s anxious/overwhelmed, he goes mute/regresses to grunts and screams and hides/absconds.

He was a reluctant potty trainer - was late with this. Never got the hang of no2s. Withheld from preschool age to the point he was severely constipated and soiling everyday from overflow. Finally after having to fight and fight that this was NOT normal , he was referred age 7 to paed gastro. Was diagnosed with encopresis (bowel stretching due to withholding so messages no longer get through). Was started on medication.

We saw huge improvements, as his bowel went back to normal function he became dry at night and started to use the toilet for no2s. He was very proud to no long we need pull ups at night and to have clean pants everyday. We were discharged from gastro.

Then we hit the summer holidays last summer - he lost the school routine and we started having soiling again. He moved up to year 4 at school and it has all been too much for him. He started setting himself at school (never did that before) and is now doing it at home as well. We are back to withholding and soiling multiple times a day. I’ve requested re-referral back to gastro.

Im exhausted. I just don’t know what to do anymore. I have to buy new pants every week as many are past saving. He KNOWS he needs to go, but if you prompt him he denies it, refuses, starts screaming that he doesn’t need to go. Then quite literally stands there and pisses himself. Or goes to his room and pisses in his room. He has said he doesn’t care if he has dirty pants. He knows he should use the toilet, but he can’t be bothered.

His teacher has wondered if it’s partly sensory and it actually brings him
comfort. When he was younger he was fascinated by his no2’s, wanted to see, touch etc. so I am wondering this as well. But a lot of it seems to just be laziness, or deliberate refusal to use the toilet.

I asked school at what point do I just accept
my son is incontinent. They said he’s not incontinent as he does know that he needs to go, and he knows when he’s had an accident.

So where does that leave me? I have a 9 year old who is perfectly happy to piss and shit himself all day long. I’m sorry for the harsh tone but I’ve been dealing with this, with little to no support, for almost his entire life and I’m exhausted, physically and emotionally. Please don’t tell me we should be getting help from social services - Children’s Services less than useless - have been out to do carers assessment and said we didn’t meet the threshold but here are some other services that might help…except they won’t because they are all for younger children (up to 5) and he is too old for them - so zero services to help. ‘Too complex’ for school nurse. Great. Wonderful. Thanks for all your help.

Please - Has anyone else dealt with similar or have any advice? Or a stiff drink?

I'm so sorry, you sound exhausted.. :-(

My ds had similar (not quite as severe) problems to yours at that age. What worked (apart from movicol as there was a physical element to this) was some time in play therapy helping him deal with his emotions and feeling more supported in managing them, and coping with school. He was a very anxious little boy at school, found the latter years of primary very hard and was later diagnosed with asd.

You have my utmost sympathy, I remember the stress and despair so well.

This sounds tough. Perhaps this charity could provide advice eric.org.uk

Sounds tough. I think go back to pull ups. Don't see this as failure or a step back. Just need to remove the stress element from it. The ASD means any emotional reaction is causing him sensory overload. Go back to the GP. Say how much this is affecting you. Stand your ground and say that this is causing you to be on the verge of a breakdown. Good luck

Call an annual review of his ehcp. Does he have ot involvement? Have the school wrote down anywhere that they feel it's sensory? If so this is evidence that he needs at least assessing by a sensory integration qualified OT. You may have to push this via tribunal which is taking about a year but hopefully other things will progress too.

When putting in for the appeal (tribunal) state that you want to appeal the social care aspects too. The tribunal will likely tell the la to assess if he is a child in need. He likely is by virtue of disability (this is not a reflection of your parenting). They will tell them to assess.

Toileting should be included as a need in section b with provision in section f. This needs to specified and quantified. It'll force the la/ school/ other profs to get their act together in this regard and put something in place.

He should have personal health care plan for school detailing what happens at school when he has accidents. Who will help him, where he goes, spare clothes, if he can just leave class to go to the loo etc, what happens if he is changing and the fire alarm goes off.

You should have access to free nappies/ pads via the nhs. You'll prob need a referal. Have a look on the LA's website for local offer.

Is his ehcp detailed, quantified and specified? Are all his needs listed and up to date? Do you feel he needs more provision to meet needs if so what and why? OT and speach therapy stand out to me from just what youve said. If not you may be better off asking for a re assessment of need, this could give you access to the appeals process quicker. You may need inde reports to support. Often the tribunal will order assessments from the la but the reports aren't very good and can be based on what is available locally or not detailed enough. There are charities that can help with these if you don't qualify for legal aid.

Give sossen or ipsea a call.

its taken 12 months just to get his initial EHCP finalised. Yes I complained. Once it was finalised we immediately called an emergency review. This was held at the beginning of December. Not written up yet. No school named on EHCP as states mainstream but no mainstream can meet need. Have appealed on section I and tribunal is set for next November. Keep calling reviews and sending it back to panel in the meantime to try and get it changed and get him moved out of mainstream before then.

His school have drawn up a toileting plan for him. He had a year of play therapy, that’s now finished. Was having Elsa before that, and that is starting again now play therapy has finished.

Already had two need assessments from LA where I requested OT - was refused.

Spoke to my GP - they just increased my antidepressants and said I needed to ‘relax’ more.

I am running out of emotional energy to keep fighting for what he should be getting. I have been fighting so long, I don’t know how much longer I can keep fighting and then I feel even worse because then it’s me letting him down by not making sure he’s getting what he’s entitled to.

Forgot to add, it’s just taken me 9 weeks of phoning and emailing every week just to get SOMEONE (not even his caseworker) to speak to me on the phone for an update on the EHCP stuff - and I still don’t have the info I asked for!

I’m exhausted and I feel like I’m failing him,

I have some experience of the encopresis with my daughter. She first began withholding at one and is now 7. She doesn’t have asd though or any sensory issues. She’s now on only one movicol sachet a day down from 8.
we are under continence team and on one of our visits to the consultant, he recommended allowing her to have her iPad on the toilet. He said it would take her mind of it and also relax her. He said even if nothing comes out, to give her regular times on the toilet with an iPad (or other toy that might entertain) to just encourage her to actually go on it. It has really worked and even now at 7, if she’s been a couple of days and hasn’t been for a poo, I’ll ask her to go and sit on the loo with her iPad. Could this work for your son at all?

It dounds like your la are giving you the run around which unfortunately is very common across the country. The more time spent doing this the less they have to fund and unfortunately the more time your son goes without. When did you get the final? You should have had written confirmation of your right to appeal as well as where to contact for a mediation certificate. There is a time frame from when you get the final to when you can appeal it. If the timeframe has passed look at the date of your last AR. Again the LA have to keep to a timeframe to issue a final from this which is enforceable by judicial review in the child's name. To do this contact sossen and ask for a pre action protocol letter, there is a charge but it is cheaper than a solicitor. If you look on their website there is a fact sheet that walks you through thd process.

As soon as you have the right to appeal, do it. Some LA'S get their stuff together through thd process once they know you're serious others will make you go through the full process.

Sorry just reread and realised you are appealing section I. Usually you need to appeal b and f along with I to get the right school. I've left the above for ref for you as you may need to change the appeal or come out of the current and resubmit for bfi and social care.

I am going to guess that the EHCP isn't very well written. Most aren't as the LA are then responsible for providing section f and funding it. As it appears you don't have ot and guessing slt section b cannot be sure to state all his needs and f to have provision to meet them. The la have failed in their assessment (inc in reasons for appeal or raise and ask tribunal to order assessments, they may not if you aren't appealing b and f also)

He should be getting any provision in section f while not at schooling worded in a way that it is unquestionable. Him not being in school is evidence mainstream can't meet need. How long has he been out of school? Was he expelled? What reasons did the school give for not being able to meet need? Did they ask for extra provision or state that they could meet need if for instance constant 1:1 was funded?

Do you know which school you want him to go to? What type of school is it, independent, maintained or non maintained? This is important as the tribunal can order a placement in some schools but not independents. Can the school you want meet all his needs?

Please call sossen, I really think if you get the ehcp sorted many of the other things will fall into place and at least some stress will be relieved for you. The tribunal will likely order a proper sc assessment. You could also argue that him being on the pathway to assessment shows the la have failed to identify all his needs as they haven't assessed him in this regards therefore can't possibly know what all his needs are in this regard. It isn't good enough for them to state will be assessed in the future etc as that should have been done in the needs assessment.

I know it's hard, I really do but keep ploughing with it. You'll get there. I'm not sure if we're allowed to post fbk groups on here but there is one which is especially helpful, I'll pm it to you. Many many families go through this. You really aren't alone x

Ps you're not failing him at all. Don't be hard on yourself. You're fighting for him; phone calls and posting on here. The system is crap and set up to be difficult. Keep going.

For us, we reached a point that we accepted it as a "normal" part of our lives. We stopped reminding, getting angry, talking about it, discussing it (we used to get so upset/angry and DC knew). We were also told it may be sensory, or defiance. We had to accept it stank and furniture would get ruined. We lost many big pieces of furnitures which he soiled and would refuse to move from so after a while the fabric/wood/material were damaged beyond repair/cleaning. We accepted that we would buy packs of pants weekly...and then he eventually stopped. It almost happened suddenly (at around 8 years). We went from daily soiling to it one day stopping. There have incidents and short periods of hiccups but overall it has stopped.

I know it sounds hard, anyway possible to just "ignore" for a while. It happens, it happens. At 9, he will know it is not acceptable but whether physical or mental, he is not there yet.

Despite the soiling, we didn't go back to pull ups because we had had periods of DC going to the toilet.

One point though, our DC would manage at school but the above happened at home. So I am not sure how to address the school.

I am sorry you are going though this. It is horrible. We had it with a foster child once. ( he had autism)All I can say is it happened for years, then one day it stopped. ANd I am still in touch with the young man, now mid twenties, and the issue never reared it's ugly head again. Sorry I cant tell you how much longer it will go on, and I'm sure you wish you knew. All I can say is for our lad it stopped suddenly aged around 10.

Hello, I can relate to everything you are going through and it’s really tough. Have have you heard of movicol mummies on Facebook? The best advice I found was from other parents on the site. I often found that my doctor did t fully understand or I’d get different advice from different GO’s.

I have no advice OP unfortunately as I have an 11 year old DS with the same issues. He's autistic a well. Been getting help from gastroenterology, he's on maintenance dose of cosmocol, senna and picasulphate daily but soiling constantly still. It improves briefly after we disimpact him with picasulphate but within days or weeks he's back to soiling constantly again. Day and night. He's going to high school next year and I don't know what to do.

He also knows its not normal or acceptable. Is so upset and demoralised by it and feels like he's never going to get any better. But he also denies it, refuses to get cleaned up, and gets violent when we insist. We're buying new pants every week because so many are unsalvageable, so much of our furniture is getting ruined by stains/smells and he's having to miss out on so many things like scout camps, school residential trip etc. I'm dreading him going to high school.

My daughter had encopresis which we finally resolved approx aged 9yrs after years of stress. I found the ERIC chat group on healthunlocked.com so helpful for my own sanity, talking to parents going through the same thing who understood how it grinds you down day after day. Good luck, I hope you can get the right help.

Until this is resolved, get a bulk order of these.

www.incontinenceshop.com/id-comfy-junior-pants-8-15-years-pack-of-14?gclid=EAIaIQobChMI1rXOnt6n_AIVF-vtCh1ZWA66EAQYASABEgIJUfD_BwE

You might be able to get them
on prescription too.

My DS 9, just finally stopped needing nappies and/or soiling himself in June. I can feel all your hurt and desperation, it's just so horrible to be constantly changing a dirty child who you "feel" should know better but "know" they aren't doing it to make your life worse....though a lot of days it feels like that.

In my sons case it was because he was born with a dysfunctional bladder so had to wear nappies as he had a hole cut from his bladder through to his stomach for urine output. So it was extremely hard to potty train no2 when he was wearing a nappy for no1 anyway.

When he was 7 he had an operation to close this hole and allow him to self catherise through a hole in his bellybutton to his bladder. We thought great, he's 7 smart and he will poo no bother.

He would not do it, he screamed and bit and hit everytime he was asked to sit on the toilet.
I was convinced it was a medical issue as he would poo standing up and he mostly had runny sticky poos.

He was sent to child psychology by his consultants and through working with her we uncovered

1. The nappies were a BIG source of security and comfort
2. He was very very afraid of toilet water splashing him
3. That he was very cross with me, dad and the drs as he has had this big operation and he's still not normal and can't poo and we are forcing him.

We started where he was only allowed to poo in the bathroom
Then on top of a closed toilet seat wearing a nappy
Then an open toilet seat wearing a nappy

He was wearing pampers size 8 nappies- literally squeezing into them. I found a bag of nappy samples I had been given by the continence nurses before he had his op which were bigger. I think we had 18 nappies and we decided that he had 18 more poos left as these special nappies were needed by sicker boys and girls. And tesco didn't sell nappies big enough any more.

So he knew the end was in sight (this was advised by the psycholgist) After day 18 he didn't poo...and then didn't for 4 more days. I really found it hard to hold my nerve but the suggestion was to give him laxatives so he had to go. He went on day 6 and hasn't looked back since.
5 mins in and out- we don't let him use an ipad as we realised he was taking too long playing games and had pooed ages before and we were trying to wipe away dried poo.

This process took from Dec to June but its like we are new people. I could have had 4 children with the amount of nappies I've changed😵‍💫

DS does have an echp at school and an assistant- but they were mainly awarded due to his bladder issues.

I'm in N.I. so it may be different where you are but here we are allowed 5 continence products a day ie 5 nappies, 2 nappies and 3 pads. It's not much but a help especially if you need access to the bigger nappy sizes. We had the tena XS and DS said they were most comfortable. Again here we can sort of self refer through community nursing.

His children's psychological services appointments were through CAHMS and in our case his consultant referred us. I know GPs, teachers and maybe even parents can self refer and they have to get back to you within 13 weeks. But again it may be differently handled in NI.

It is such a horrible things for you and your son to be going through. It feels so lonely and isolating for you all as well, especially him.
I hope you find a solution for him soon but I would agree that the nappies may well have become some sort of comfort item based on our own experience 🌻

I have posted on this before.

I thought (still think) that there might be an emotional attachment to night time pull ups in the case of DD.

www.mumsnet.com/talk/am_i_being_unreasonable/4599386-emotional-attachment-to-night-time-pull-ups