The fight for care is exhausting. We are only now, with my son at 8 years old, accessing the care and support he deserves, as we now have a disability specific social worker and a directory payment package for respite hours. That support unlocked a lot of other things - free summer school with 1-1 assistance, blue badge application supporting statements etc etc. It took me two years of fighting to get that help, and three rejections, and I did give up at times, and have to come back to it all after a break. In the end it's finally paid off, and as his social worker said to me recently 'His involvement with us will increase as he gets older, rather than decrease, so it's good we have him in our books now'.
I also had to take our LA to tribunal for his school place.
My son needs 1-1 care at all times, as like a PP said he's like a toddler in a bigger child's body (no impulse control, v little danger awareness, sensory seeking by mouthing things etc etc). And it's exhausting. But I swear I would still have him all over again even if I knew what I was getting into. I can't imagine life without him, the idea leaves me cold.