Incontinence in child with ADHD/other sensory processing challenges - where to turn next?

[TheNavyOtter]

Hello - I am actually posting this for a friend, who has asked me to do so as she is totally overwhelmed. She's looking for any leads really, at what do next

Friend's DS, year 5, is still not truly continent. Her DS has ADHD and is undergoing ASD assessment (but prob, she thinks, will not be diagnosed with ASD - psychs seem to indicating that doesn't quite fit). He seems to have various sensory processing challenges and may fit the criteria for other forms of neurodivergence (not yet assessed fully for dyslexia, but big challenges in writing). He is also anxious (though not formally assessed for this, he has all sorts of signs of anxiety and a family history). He does not have any learning difficulties (although the ADHD and writing challenges are holding him back) and is in mainstream schooling.

As a small child, he was slow to come out of nappies, and developed constipation, resulting in overflow soiling - which was detected after a period but which made the early years at school (when he had accidents) incredibly stressful for all concerned, as it wasn't handled particularly empathically by the school.

Ever since then, the problems have continued. He doesn't soil himself at school any more, but regularly does outside of school. He is resistant to setting up a toileting regime (and wants to be rewarded for sitting on the toilet).

He has since been on a regimen of laxatives (under medical supervision) and drugs for bedwetting, and been assessed for bowel and bladder obstruction - nothing physically wrong found. He eats a perfectly fine diet.

My friend has tried to seek an OT referral but not got one - v tight resources in our area. She reckons his problems are likely partly psychological in origin, but probably compounded by general sensory processing challenges which mean that he really may not 'feel' when he needs a poo, and also is resistant, probably because this whole control over his bodily functions must be horrific for a child.

Has anyone been through this, and what's the right specialist to help? Is it a psychologist, a psychoanalyst, a specialist nurse, or what? Any names, avenues to follow, organisations to advise, success stories would be greatly appreciated.

Is your friend’s DS under the continence service? If not, he needs a referral to them. In some areas, you can self refer. If she can’t the school, school nursing service or GP will be able to.

I would request a referral to CAMHS. Again, in some areas, she would be able to self refer.

Does DS have an EHCP? If so, sensory OT can be included in there regardless of what is typically available in that area. If he doesn’t have an EHCP, she should apply.

Has anyone mentioned the possibility of DCD?

Thank you @StrivingForSleep

My friend's DS has been referred to the continence service I believe, but her experience of this was that they conducted hospital checks for a physical cause which threw up nothing - and then things didn't go further.

Her's DS's current ASD assessment (and former ADHD assessment, which he does have) are/were with CAMHS. I think my friend has wondered about DCD or maybe dysgraphia or dyslexia, but no tests yet. The tough thing is, as a clearly neurodivergent (for want of a better term) but not necessarily in a clear category person, the pattern for her DS has been a referral to CAMHS, a test for one form of neurodivergence, then back onto another 18-month waiting list to await assessment for the next thing, during which time the poor lad's challenges are not solved.

He has no EHCP - basically the school seems pessimistic about getting this - he's probably performing average on assessments aside from writing (which apparently doesn't count). I get the impression the school and LA is totally overwhelmed with potential EHCP applicants and while they acknowledge he has complex needs, he isn't behind by the requisite two years. And these days -the continence is a home issue, though one that obviously impacts his whole life in reality.

In short, everyone is acknowledging he has complex challenges - but there does not seem to be a straightforward route to solving them. But sensory OT does sound like at least a route of support that might help?

The continence service should be providing more help than physical investigations. Your friend should request another referral. If it is refused or they are discharged without any actual help, she should complain.

In some areas where ASD and ADHD assessments are undertaken by CAMHS you still need a ‘normal’ referral for more general input not just focused on ASD/ADHD assessments. If that is the case where your friend is, she should ask for a separate referral.

Your friend should request an EHCNA herself. On their website, IPSEA has a model letter she can use. Unfortunately, some schools incorrectly tell parents their child doesn’t need or won’t get an EHCP. Your friend may have to appeal, but it is possible to get an EHCP. It is a myth that the child needs to be 2+ years behind and difficulties writing can absolutely be considered.

Thank you, I'll pass all of that on to her. It's quite tough with the school as the fundamental tone seems to be 'we are overwhelmed and there are many kids in a much worse situation' which is perhaps true. But that, of course, does not help you and your own child - and these issues could cause so much distress as her DS gets older, and doubtless are now.

Other pupils’ additional needs are irrelevant to whether your friend’s DS is legally entitled to an EHCP. IPSEA and SOSSEN’s websites have lots of helpful information on. Well worth your friend reading them and the SENCOP.