7 yr old son fully incontinent and school refusing to help

Hi my lb is 7 P3. We are in Northern Ireland. He is currently using another child 1 to 1 who will take him to the toilet 2 to 3 time daily. She can’t help him as she isn’t assigned to him or his needs. He doesn’t usually do a pee anyway it just going with the programme suggested by Austin intervention and continence nurse. We have been luck up until now there hasn’t been a poo. Problem is now he’s on bowel medication and in until 3 so it’s only a matter of time before a bowel movement in his nappy occurs. During a meeting this week the school have said I will have to come in and change him and they will not apply for support. Continence nurse is a nutcase who keeps changing tactics and admitted to not understanding ASD toileting delays. She suggested after Christmas that he be sent in to school in pants with a vibrating alarm. Ummm what? He doesn’t know when he needs too pee or poo and doesn’t realise half the time he is even wet or dirty. Also his sensory issues and a vibrating alarm on him are a no no. I should add he also does not feel hunger and is at risk of a feeding tube due to failure to thrive. The school are insisting they are doing their part and went behind our backs to contact EA to let them know they were making reasonable adjustments for him and he doesn’t need a statement or health care plan and so they have said they won’t even entertain an application for assessment of needs from us as parents. I feel we are going to have to pull him out of school before he ends up peeing or pooing and another child noticing and nobody there to change him. Btw continence nurse suggested he could be given a nappy and wipes and sent in to clean himself up. He can’t even dress himself or use a knife and fork and she expects him to change his own nappy?? Please please if anyone has any advise to help get him the help he needs and moved to a school that is more for his needs I would be so grateful.

[Purple2019a]

You're child definitely has needs and i would talk to the senco of the school contact the Head teacher or governors of s hool. You're child has complex needs and there not meeting his rights as a child let a lone a child who possible has sen problems. Dont give up fight for you're child xxx

[Hidden in reply to Purple2019a]

I have spoke to senco and head of school. They are fighting me all the way on this and say they are meeting his needs. I will keep fighting and if necessary remove him from school until provisions are in place or he is given a suitable placement for his needsxx

[Redxmas]

Hi

I am in Northern Ireland too. Please see my recent post.

healthunlocked.com/eric/pos...

My have a meeting today at the school as they were contacting education authority. I will keep you posted of my experience in case it can help

[Hidden in reply to Redxmas]

Oh thank you please let me know how you get on. We are seeing community paediatrics this afternoon so hopefully get some help from there 😊😊

[Robinia in reply to Hidden]

I would phone the Eric helpline and get some advice. What the school are doing sounds illegal. Also I would push for gastroenterologist referral. Please let us know how you get on. My friends daughter had severe constipation and failure to thrive and ended up getting diagnosed with pseudo bowel obstruction. It’s rare but does happen. From your post it’s unclear if he’s constipated and soiling or not yet continent. Do let us know how you get on.

[Hidden in reply to Robinia]

Hi thank you. He’s actually both incontinent and has always been constipated. He’s on medication to make his bowel move more regularly and this means the chances of him soiling his pull-up in school has been raised significantly and they are saying if that happens I have to come in and change him. His continence nurse hasn’t even done a medical evaluation to see if his incontinence is because of a medical condition and is just assuming it’s his ASD because he doesn’t feel hunger, the need to empty his bladder or bowel and doesn’t recognise when he is wet or dirty 90% of the time. I have now contacted my local MP who also happens to be a barrister in the hope we can get this sorted xx

[Robinia in reply to Hidden]

Oh that’s great re MP.

School need reprimanding.

How did you get on with community paed?

[Hidden in reply to Robinia]

His continence nurse has not been filing reports so atm there is actually no evidence of what’s happening in his medical file. She has failed so badly doing her job with my son and getting him the help he needs it’s outrageous. It was actually her that suggested he clean himself after a dirty pull-up in school. This was said in a meeting with school giving them all the ammunition they needed to say he didn’t need 1to1 care 😳😳😳xx

[Hidden in reply to Hidden]

Pead did say once he had those reports he would help file for statutory assessment also continence nurse said his dietician is wrong about failing to thrive and she conveniently didn’t get an invite to school meeting because she can verify his eating issues. It’s the continence issue that we are fighting over with school and failing atm 😩😩

[Robinia in reply to Hidden]

You have been given rubbish support by the sound of it. Deffo worth contacting the ERIC helpline. Sounds as though the paed is taking it seriously which is positive. I’m so glad you are taking all the positive action you are. Sometimes you just have to get the right medical person on your side and it can make all the difference.

I’m disgusted by the school. They have legal obligations. ERIC helpline would probably advise you well about that. Good luck with your MP xx

[Hidden in reply to Robinia]

Thank you so much. He did see a medical consultant last week who is taking it very seriously and had already sent a letter to education authority to question where this child’s help is and why nothing has been done. That’s the only positive so far xx

[Hidden in reply to Robinia]

Btw I’m definitely contacting Eric support line and I’ve also been I touch with children’s law society who said we had at least 2 different legal cases we could persue

[Robinia in reply to Hidden]

That’s great, so important to take these schools to account. I’m really pleased his health is finally being taken seriously by medical doctor as well