I can’t do it anymore

[Donein2023]

Sorry to be so terribly depressing but I’ve had enough. My 2 kids and husband are neurodivergent. Kids are very high demand PDA profile of asd. Undiagnosed, on the waiting list and still have another 2+ years to wait, can’t afford to go private or I would. Work FT. No family support. My mental load is huge. I can’t take it any more.

Could you afford to take some time off work? Either sick leave or parental leave. Are you receiving DLA for DC? Does DH receive PIP?

Have you had social care assessments? A carer’s assessment for you and assessment via the disabled children’s team for DC. Potentially an assessment for DH too. If either DC is under 5 Home Start may be able to support you too.

Do DC have EHCPs?

That sounds really hard.

Try not to put too much pressure on yourself. Just keep basics ticking over.

I can’t sadly, I have taken 1 day annual leave today but one day doesn’t really undo 8 years. I am feeling better just staying in pjs today though.

No DLA or PIP yet, I’m halfway through the papers, need evidence and chasing everyone is hard work- everyone ignores me and I’m pushy so assertiveness isn’t an issue.

i didn’t know about the carers stuff I will look at that, thank you

When you feel able to, the Cerebra guide is helpful for DLA. For PIP, the benefits and work website is good. As is this guide (not my local area, but it is one of the better free guides by LAs). For evidence, submitting SARs (ICO has a model letter you can use) may help as then it triggers a formal deadline.

For social care assessments, Contact has model letters you can use for DC and a carer’s assessment for caring for them. For an assessment for DH and a carer’s assessment for caring for him see here and here. Although you could combine the 2 carer’s assessment model letters.

If DC don’t have EHCPs, IPSEA has a model letter you can use to request an EHCNA. If they do already have an EHCP, IPSEA has a model letter you can use to request early reviews.

I’m with you. I don’t think anyone can possibly realise how hard it is until you’ve lived through it. I was looking forward to a family day out today after working all week; my daughter wouldnt stop screaming, completely lost her shit. My husband had to pick her up and take her out and she scratched up his neck so much she drew blood. Now I’m sat in her room (again) trying to get her to go sleep. Probably a replay tomorrow then back to work on Monday. Keep hoping it will get easier!!