Withholding/ constipation

[mmecr]

Hello all, my son is currently on the waiting list for an autism diagnosis. He has had withholding issue’s since he was very young, I’d say it could even be as early as a few months old. Suspected due to sensory processing disorder. He has been on stool softeners for the last 5 years because of these withholding problems which have only ever been dealt with as constipation by the doctors. Being on these stool softeners has resulted in faecal leakage almost daily. There doesn't seem to be any support or guidance offered, or available about this problem from the doctors so we have just got on with it and done the best we can ourselves. My son was using a nappy to open his bowels until he was about 6, now at 8 he can use the toilet but has to be reminded/prompted to use it daily, although doesn't actually open his bowels daily. Sorry if this is all TMI but I was just wondering how common this is for children with sensory processing disorders? Has anyone else’s child/children had this problem?

Is DS seeing the continence service &/or a paediatrician? If not you should ask for referrals.

For sensory issues in general has DS had a sensory OT assessment? If not and your area still commissions sensory OT on the NHS ask for a referral. If DS has an EHCP sensory OT can be include in there.

Thank you for your reply

DS is seeing paediatrician but no one's ever mentioned continence service.

No he hasn't had a sensory OT assessment.
He is on the CAMHS waiting list for OT
He has also been on the neurodevelopmental waiting list since 2019

I'm not sure what an EHCP, but if it is what I think it is then we have just had a meeting to discuss this. He doesn't meet the criteria for an IDP, so is on a universal version with the school

In some areas you can self refer to the continence service.

Have you appealed the IDP refusal? An EHCP is for England, it similar (although there are differences too) to what your IDP is.

Ok thank you I will look into that.

There wasn't a refusal for an IDP as such. In the PSP meeting we had recently I asked what an IDP would help with and he teachers and the lady holding the PSP meeting said that an IDP wouldn't be useful in my sons case because the only help it would get would be a one-to-one teacher and his needs aren't severe enough for that. They couldn't tell me what else an IDP would serve purpose for so I couldn't see the need for one either. They did say that an IDP would be useful for secondary school though and will make sure that is in place before he moves to secondary school. The school he will be going to has a good ALN department so apparently and IDP will help with that.

an IDP wouldn't be useful in my sons case because the only help it would get would be a one-to-one teacher

This is nonsense. DS should have an IDP at a school level anyway. I thought you meant he had one maintained at school level, and the LA had refused to take over maintaining it. SNAPCymru have lots of helpful information on their website and can help you. For example, an IDP can include OT and SALT.

I'm not really sure what to do with that information. My mum looked on snap and told me I should look into getting and IDP, but I jut can't find what it would be useful for in the school he is in now. He is on the waiting list for OT through CAMHS.
What may I ask is SALT?

Thank you for your help btw.

An IDP can include provision in excess of what would otherwise typically available, for longer and without the need to sit on the normal waiting list.

SALT is speech and language therapy, which is about far more than the physical ability to speak, and if ASD is suspected it will be helpful.

Ok thank you.

I'm not sure why the school and this lady (I cant remember who she is) are against getting an IDP for him then. I felt like this was sorted as they are finally understanding his additional needs in school. Maybe I need to go back and rethink this again.

Unfortunately many schools say an IDP (or EHCP in England) isn’t necessary but parents go on to successfully apply/appeal themselves.