Hi All,
I have 3 children all with ASD, A Girl aged 13, another Girl age 11 and a Boy age 7, also my Husband is on the spectrum, but un-diagnosed. There needs and difficulties are all very different, so are there strengths.
The problem I have that I really need advice on is my Middle Daughter who is 11. She has always had sensory problems with wearing clothes on her belly button and wearing underwear, this has got gradually worse over the years as puberty has taken it's hold.
She is verbal and describes wearing underwear as painful and she can't cope with the feeling. It has got so bad now that underwear and trousers are worn so low that it's causing major problems in public with her constantly pulling them lower or putting her hand down her clothes to more them out of the way. She now shows areas of herself at times that if not constantly reminded to pull them up or stop she could put herself in a very vulnerable position.
I have tried all types of underwear to no affect.
She got clean (out of nappies) at the age of around 6 years old and from then she was totally clean day and night. A few months ago I noticed small amounts of urine in her underwear and and she was constantly going to the toilet, like a ritual before and ending something.
I got her urine tested for infection, it was clear. Since then the situation has gotten steadily worse, she started totally wetting the bed at night, she has wet underwear on most of the time and isn't bothered by this. It's not that her body is subconsciously doing it, she is pushing the wee out.
After lots and lots of talking and her finally admitting the problem she told me it's after she goes to the toilet. She goes as normal but then feels like she has the feeling to go again. This feeling to her is unbearable and so strong that it can't be ignored, yet she won't go back to the toilet or stay on the toilet.
She just pushes it out. She is constantly worried about her bladder, she thinks it will burst or that it will leak inside through it, or that it's dangerous to have wee inside you. She punishes it and wants a bladder transplant as it needs to learn (her words).
I have showed her how the bladder works on video clips, read to her about it, explained about how it works and that wee inside you is safe, but this is still happening and nothing seems to help.
She has recently moved to a different part of the School and also having to deal with a lot at home with her siblings difficulties, but I really need to help her and I do not know what to do.
She will not wear pads as the sensory difficulties mentioned above will not allow her to manage that.
I dread it when periods start but really am at a loss on what to do to help her. All her doctors are struggling on the best approach, but I am having to support her and help her, but am exhausted with it all.
Any advice would be greatly appreciated.
Kel
