So my daughter is disabled, she has autism, suspected learning disabilities, language disorder, hypermobility, spd and is double incontinent. She's 9. She's in a mainstream school with autism hub. She's under continence team for her incontinence.
Yesterday we had a child in need meeting as we are under social care due to us having 3 kids with additional needs.
Yesterday was mentally draining. I was accused by both her school and continence team of neglecting her health care needs. To say I was upset was an understatement. I have autism, adhd, chronic fatigue syndrome, newly diagnosed sleep apnea, vit D deficiency and iron deficiency. Due to extreme stress and catching covid twice in just 5 months, I was bedbound as the covid and stress of losing our home on a no fault eviction flared up my cfs and caused me adhd burnout. I was very poorly. I'm recovering now on medication for the vid d and low iron, but still waiting for my cpap.
My daughter is on the children's disability waiting list for her incontinence too. She's 9.
So school and continence team have put in a toileting plan for her. At home, she's extremely reluctant to use the toilet, she cries and screams if we try to encourage her to sit her on it. We've been trying for years now but she will not entertain it at all. We've tried everything. She's also been put on movicol, cosmocol and senocot. The senocot has no effect as it's given in such a small dosage. And she will not drink cosmocol or movicol at all.
She's same at her nanna's with using toilet as what she is at home.
School say she's really good for sitting on toilet there, says she sits on toilet really happy, she's yet to do anything on toilet but still happy to sit on and even wipes herself.
Continence team asked us yesterday how we change her, if we clean her stood up or lay down, we said lay down as everything's always really messy so this is only way we can clean her properly. They said at school she's cleaned stood up. I found this bizarre as it would be impossible to clean her stood up.
I had a telephone appointment with continence team about 4 weeks ago where they wanted to try her bit longer on senocot and cosmocol. She was still reluctant to drink it but I thought it would be worth while to wait until the child in need meeting to discuss where to go next in terms of her not taking her medication. I've also been really poorly too and the passed 2 weeks I've just been trying to rest as I have to take care of myself too.
Both the school and continence team were accusing us of not trying to toilet train our daughter and believe us to be lying when we tell them what she's like when trying to get her to sit on the toilet. And also accused me of neglecting my daughter's healthcare needs by not contacting them to discuss her reluctance to drink her medicine. They said I should also put my illnesses to one side and put her first. My daughter has not been in any pain, she's been eating fine, and drinking fine, if she would've Bern in pain, off her food and drink, I wouldn't hesitate but to have her looked at and medicine changed etc but she's been absolutely fine, the only distress she's had is when we tried to sit her on toilet, but this is ignored by continence team as they don't believe she gets like that. I also put a complaint to the school's chair of governors about certain factors with how the school has been communicating about us, and the safeguarding lead and head have now taken the funnys with me and are horrible towards me in messages. Accusing me of being a terrible parent because I've been poorly and bedbound for months. I'm under several different specialists because of my conditions.
I've really had enough and don't know where to turn now. I'm having to document and evidence what my daughter is like when we try to get her to use the toilet. She's riddled with anxiety. We are waiting for children's disability team to send out appmt about her reluctance to use toilet as we don't know where to turn with her at all. We don't know why she's apparently really happy to use toilet at school but not at home or at my mum's. I'm fed up of not being believed and deeply upset about being accused of not putting her first and neglecting her. That don't seem to understand how horrible it is living with all the conditions I have, how viruses and stress make them worse too how bad anxiety can effect a person too. They also don't seem to understand masking behaviours either, as it's obvious my daughter is masking her toileting behaviour at school.
All they are doing is placing judgment on me and taking offence when I complain about things I'm not happy with. I do have a right to complain.
What can I do from here? I'm at a loss.