I am new here. My husband and I have 3 children and our eldest daughter (just turned 17) is diagnosed ASD. She presents as well as she can and masks well at first glance but manages ok but this requires a lot of support from myself along the way. For example, prompting to eat, wash hair, eat suitably. This does not include the emotional support I give. She attends college 2 days a week. On the days off she struggles as I work 2 of her days off and then the other weekday she needs me to take her out, do activities with her or she has nothing else really to do. Wothout a purpose she gets realy down and just sits alone in her room.
at the moment this is working ok, apart from me not having much money but at some point I am hoping to take on more work. Not just for money purposes but so I have something else for myself. But I cannot find work around this. So my query is regarding care / support for my daughter. Like how do I even start thinking about a possible PA or something similar to support her when I am not available? I have spent a long time trying to come to a solution and nothing is spoken about anywhere?
Which is one of the reasons I have been unable to cope with full time work. The other reason is doen to the possibility that I am possibly also in the spectrum (adhd) but the wait for this assessment is 3 years.
anyway, what do people advise I do? I am really unsure about having someone come in too because I am not sure they would be able to do what I do. Then I worry my daughter will just be overwhelmed and it will come back to me threefold. For example when she’s been with family members for the day to “help me” and they’ve not done things right or how I do it. Some family member ms have actually said it’s too hard for them too. Which leaves me feeling like I can’t ask them again. But the worst thing is how she behaves when she is home afterwards. Screaming, negative, meltdowns, isolating herself, ranting, etc.
i am finding it hard and I am burnt out from recently trying to take on full tiem work. And this year has made me re evaluate everything like I am not super human and I can’t do it all. There just doesn’t seem to be options.
she does get PIP which comes to me and I give it her in small amounts but there is money left over each month
