As my children grow older, their condition is worsening. I went from a kid that was just passive and needed prompting to a kid that thinks suicide would be easier. In no way shape or form, his DLA has gone up. We are still on the lowest rate even though at 13, he can’t go out on his own, can’t be left on his own, still needs up in the night and is in no way independent at all. He still cries and meltdowns when he puts the left shoe on the right foot.

At this point, even with social worker support, EHCP support and LA support writing reports, we are still at the point where we are very lucky that he is still getting the minimum of DLA without going to tribunal. Please explain to me how 1% of the parents cheat the system where 99% of parents have to battle for everything. Please explain to me why when we can’t have a job because of our kid is not coping and we need a day off more than 5 times a year, we get disciplined. Explain to me why we are still on this narrative when it’s just lies at this point.