Just need to vent a bit to those that understand life with disabled Children.
I am a single mumto 4 3 of whom still live at home and all have varying disabilities. I really struggled in the easter holidays as they are all so different with different needs and trying to meet them is so hard. My community nurse came in one day , found me in tears. found out how old I was(!) and said I am going to get you extra help for the summer. I should say my 15 year old is away mon-fri at school so holidays that wee bit more stressful. I am a positive person who takes what life throws at me and works out the best way forward but feel the exact opposite at the moment. I have no idea how I will get through the summer break without cracking. The extra help is not going to happen as no-one will say what is available - I just get asked what do you want and the short answer to that is I have no idea as I have been doing this for 23 years so do not realise what I am doing that is beyond the norm.
Sorry for being pessimistic but my glass is half empty just now!

hun, sounds like your going through a rough patch! like you said, you've been going for so long its just norm to you, its hard to take a step back and see it for all it is! try not to get down and have a good long think about what you think would help you....respite? clubs for your eldest? its difficult when one is at school all week because you get used to carrying on without them, then in the hols theres an extra person who needs you too and it often tips the balance! your not on your own and dont feel pressured into accepting help your not happy with, i for one know its easier said than done to let them go and accept help

xx

It must be so hard for you, as i know my self i have my son who has needs quite a lot of needs my son has and i am not looking forward to the summer hoildays what to do with him i have one week in the break where i can drop him of for a few hours each day for the week pip worker and that is it finding hard with my daughter who is 6 months old i find myself in tears a lot trying to get on just need a break so it sure is hard bet you do a fab job hun