My little boy is nearly 10 and has Autism. He has encopresis and enuresis due to anxiety. The wetting started in 2019 when he was 5 and he started to struggle at school, but it got 100 times worse in 2020 when the schools closed for covid and the soiling started in April 2020. It will be 4 years in few weeks since I have had to deal with this every single day and I am exhausted with it. I have tried everything to get him help, he was under CAMHS for 2 years and they tried every type of therapy possible including EMDR twice, but nothing worked and in the end they just gave up and discharged him last July. Since then he’s gotten worse and is now under the CYP Autism service. He’s had 2 school observations and 2 face to face appointments by them since November and we are now waiting for their ‘plan’ on what to do next, which looks like it will be a referral back to CAMHS as they are having a meeting with them about my son next week.
I am past crying as I no longer have the energy but I can’t carry on like this. I feel like a robot just going through the motions everyday with no end in sight. I feel awful for saying this and none of this is his fault but I can’t leave the house for longer than a few hours, neither myself or him have any quality of life. He can’t have sleepovers with his friends, stay at grandparents or go on school residential trips. Because he is approaching 10 he is also very aware of this condition and he’s so embarrassed by it. He will only allow me to clean him and constantly apologises for it. I tell him it’s ok and he never has to say sorry but he questions me sometimes as he says things like ‘my words don’t match my face’. So I feel like I’m constantly putting on an act so he doesn’t feel guilty or embarrassed, as the idea of that breaks my heart. But like I said I’m so tired and so worried about the future for him. I’ve done hours of research on the condition and it says it can continue into adulthood, if it does for my son, how will he ever have a girlfriend or go on holiday with his friends etc?
I’m told my son’s case is rare (so that’s why they are struggling to help) as he has non-retentive encopresis, which means there is no physical reason for him to do it (like consitipation), it’s neurological. But they refuse to refer him to a neurologist. I did find a private specialist but when I contacted her I was told she is no longer taking new patients and I can’t find anyone else.
They also say one of the reasons they are struggling to help him is because “he doesn’t communicate well”. He has selective mutism and shuts down when he becomes overwhelmed. Also because he masks at schools he doesn’t soil there, but when he comes home it’s like flood gates opening and it’s just constant all evening 🙈 I’m told this is because he feels safe when he gets home, relaxes and this is like a physical release of stress and tension. I always thought the fact that at least he doesn’t do it at school as a blessing, but I’ve recently been told that if he did he would probably qualify for an EHCP, you can’t make this s*it up!
Also he doesn’t drink or go to the toilet all day at school so gets constant UTI’s. I’m told this is because his body has trained itself to not go so he doesn’t have accidents at school. He will only drink when he gets home.
I’m just desperate. Is anyone else going through this or had experience? Does anyone know of any private specialists that can help us?
Thank you for reading, sorry it’s long x