DH and I have three children (17, 16 and 13) the 13 and 16 year old have asd and ADHD. The 13 also has learning disabilities, epilepsy, emotional behavioural issues and an autoimmune disease.
They both get DLA and youngest gets direct payments. I’m really struggling to care for the youngest. She is non speaking aside from the odd word, she slams doors, hits me, hits her siblings, spits at me. Her siblings have to lock their rooms so she doesn’t go in a destroy things. We are lucky that she has a school placement which she goes to, I collect her as the taxi company can’t find anyone else who will do it. She sleeps now which I know we’re lucky about. We’ve got direct payments but can’t find a carer. She’s due to get 4 nights of respite a month soon but I’m really struggling to cope with her. We’ve had various teams out and they’ve all said we’re doing everything we can and to just let the small stuff go (she gets stuck in fixation loops on things, controls people’s behaviour such as lights being switched off, arms not being crossed. She’s got a lot of obsessive habits that affect others). They’ve all left us with visuals and that’s been it. I suppose what we want is to be able to access the world outside more. She cannot access Sen clubs, we’ve tried and she’s very against it.
I’ve reduced my work days down from four to two day (I’m term time only), I try and do a few small breaks a year to get some time away from her. She won’t leave the house except for school. Occasionally we’ll take her to a quiet country park for an hour max but there has to be two of us as her behaviour is unpredictable (she recently kicked a member of the public).
I love her to bits but even her eldest sibling is fed up of her behaviour. Her other sibling who also has asd cannot stand to be around her.
How do I make life more manageable? We run with low demand for her and try and edge her out of our comfort zone but she has no interests and if we took her somewhere she really hated she’d scream loudly. She’s got an AAC to use, an iPad she can use all the time to regulate her. But I feel our life revolves around her completely.