Do you get fed up of the intrusion into your life because you have a disabled child?

[Owllady]

I am having one of those days.

But I don't think i can even put into words how demoralising it can be sometimes. You try your hardest every single day, sometimes you can't cope but you get up put one put in front of the other and someone else's needs always come before yours and yet you get criticisms, often unhelpful, from people who are supposed to be there to support you. It's as if somehow you have become public property, you are no longer just someone's Mum you are accountable for all of it, everything. As if it wasn't overwhelming enough

[Bluebirdonmyshoulder]

That's good advice moondog, I know just who I'm going to cut loose. Been wanting to do it for a while and was trying to think of a socially acceptable excuse.

Now I'm just going to be honest and say we have so many appointments and I'm prioritising!

[hazeyjane]

I think at the beginning it is hard to know the people who are going to be the important people in your dcs life. Our portage worker has become very important to us, I don't think I would have predicted that at the beginning, and found it odd to have this larger than life character in our house, playing these big exaggerated games with ds. But he adores her, and the way she connects with him is brilliant, he loves the slapstick and big dramatic gestures we have her picture up on our fridge!

But it took us a year to realise that ds's ot was just crap, I didn't even realise what she should be doing, and it was very cathartic to sit in a room with her and ask her what she was supposed to be doing for ds, and after she explained, to say that I didn't think she was doing any of those things, and could we have someone else please.

We have had the opposite of a lot here, in that we have struggled to have people do home visits, despite ds being very difficult in other environments. I have become a lot more bolshie about the whole thing, and now we do get more home visits, and I prefer that because they get to see ds, rather than him climbing in my lap and hiding.

In fact ds's physio is coming over at 10, so I had better clear a path amongst the toys!