How do you manage? Disabled family

[Strugglingmum12]

I have NC for this post.

I am struggling and feeling like I am at the end. I have a physically disabled husband who's health is deteriorating as the weeks go on and we also have a son with autism and sensory processing disorder (and I suspect ADHD since I also have ADHD but he is only 2.5 so no idea yet!). We are in crisis and I don't know where to turn or how to get help. Husband doesn't want a carer or feel it would be of any benefit and I agree with him, our son is what I need help with but I don't know how to get it. He doesn't start nursery until next year, we have no family around to help (or unwilling to help because DS is too challenging), no one around to support us and seem to get passed from pillar to post when it comes to professionals.

I am currently unwell with pneumonia but can't stop because they both need me.

What do I do? Who do I speak to? How do I go about getting a carer for my son? Someone to help out with him? What do you do? How do you cope? I feel like we are barely surviving. He doesn't sleep, so I am not sleeping, I can't keep my house clean or tidy, I can't function properly, I'm not the mum I want to be.

Could you contact your local social services for children with disabilities and ask for an assessment for Direct Payment hours? You could use these to hire some help for your DC if the assessment reflects there is a need there which sounds like there is. Also get in touch with local ASD groups and charities, they will likely be running some social groups for the children and parenting support groups. Good luck

Whether you can access help with your son is dependent on whether his needs mean he requires additional care over a typical child of his age, generally under school age this would be met by nursery funding from 2 rather than in home help. You dh on the other hand should be able to access help if he needs care as that is "not a normal situation". If he accesses direct payments for care, you could hire directly a carer willing to help you more generally

As a first point of call Home Start might be useful, make contact and see what they can offer and if that is appropriate to your needs.

If DS has a diagnosis already he must have quite substantial needs, you could try contacting your nearest HV or even your nearest specialist school in September and seeing if they can signpost you to early years support groups they are aware of.

If DH won't have a carer could you get a home help to assist with chores instead of personal care, that would alleviate some of your responsibilities.