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Struggling with dd and day to day activities (autism)

2 replies

difficultieswiththings · 05/01/2025 07:37

Dd (5) is struggling a lot and can’t manage to do some day to day tasks. If we add something new or different she then loses the ability to cope with something she has previously been ok with . Likewise if she’s felt anxious she will lose a skill. For example we went to a cafe the other day she coped well (or so I thought) and had a little hot chocolate but then ever since we got home she will not drink out of her usual cup she has meltdown after meltdown and is terrified and we’ve had to get a sports bottle for all drinks now as an open cup is now terrifying to her. She is virtually non verbal so can’t tell us exactly what the issue is.

During the summer we went swimming, she didn’t even go in the showers but saw them-for 4 months afterwards she then wouldn’t go in the bathroom as was scared of the shower we had to just do washes and use a baby paddling pool in the kitchen for her. We still have to cover the shower head now even though she will go in the bathroom again.

those are just 2 examples there are many more and I don’t know what to do. Everyone keeps saying she’s doing well and trying to be positive to us but she’s not doing well and I feel like I’m asking for help and just being told she’s doing great but she’s not coping with some very basic day to day things ?
It’s like a trade off - we can’t try anything new or different without losing something she is ok doing ? Is this how it will always be or does her mind have some kind of limit of things she can cope with and if we add an extra one she has to drop something else so somehow balance her mind ? She is on the CAMHS waiting list but in our area it’s extremely long.

We saw an OT privately as the NHS wouldnt see her as the service is basically not functioning . We got some good ideas and are trying some of the things suggested but not seeing any results yet.

Has anyone got any advice or been through this ?

OP posts:
BlwyddynNewydd · 05/01/2025 11:59

I have an autistic 18 year old daughter, but she's always spoken well. Though that didn't stop the meltdowns.

I think, in your position I'd use signs and also Picture Exchange to manage changes. And use the pictures to show routine, so basic routine doesn't come as a surprise. That might take some of the anxiety of not knowing what's going on away. That might mean she's less overwhelmed when faced with challenges.

Mine didn't like the shower or water on her head, it was a sensory thing. And changed such as using deodorant were an absolute nightmare. She is also extremely demand avoidance - so framing things as a choice.

I would also look at desensitising her to things she's avoiding. So for the shower - YouTube videos of showers/how they work. Showing her they won't turn on themselves etc.

Taking her cup with her everywhere, and maybe a funnel. You can have the drink in the cup it comes in, but offer her hers and pour it into hers if she wants that.

Have you got ear defenders for her to wear while she's out? She may be overwhelmed by the noise etc and that's making it harder for her to cope in cafes etc.

BlwyddynNewydd · 05/01/2025 12:05

It's a time table, so you can show her your plans for the day. You can use photos of the cafe you go to, take photos of your house, her school etc.

I used to support an adult who was non verbal. I'd have a folder on my phine with images of the places we visit. People we would meet with etc. I could show her what we were doing. If she's overwhelmed and struggling to process words, an image can help to explain.

Also have a look at intensive interaction.

https://www.sense.org.uk/information-and-advice/ways-of-communicating/intensive-interaction/

Struggling with dd and day to day activities (autism)
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