I mean we did a lot of problem solving in the last course, so a parent would say a situation that they would have. You know, “My child when they go to the shops with me will present this sort of behaviour.” So then we would sort of give ideas of how to minimise that sort of set up and I think it is a learning curve for all parents, because a lot of parents probably think they have to take their child shopping. I wouldn’t take my child shopping if you paid me to, but I have had to make that adaptation and the occasional time when I have had to go and get a pint of milk, he has stolen something so we have had another issue to sort out, but I don’t go and do my weekly shopping with my kids. I am not able to. Otherwise they would be, I don’t know whether they would be the ones screaming on the floor or whether I would be the one, you know. So just a simple thing like going into the shop and buying a pint of milk can present itself to be a big issue and that gets you down quite often.
You think you know you can’t go into a restaurant and have a nice family meal. You can’t go to a friend's house just on the off chance, you know, pop in and say hi and that because unless you prepare them that that is what you are going to do, you know they go, the whole thing goes kaput. I mean I have gone to people’s houses and I have said, you know, if he starts we’re going home, you know and sometimes he has been fine because he wants to be in a new environment but leaving the environment has been hell, down to having to pick him up physically from his arms and his legs and carry him out to the car because he just would not come. So then you have had a nice time with the family, everything has been fine and then the last minutes they will remember you having to drag your child out. So there is always those sorts of issues.
But I have learned. I have had ten years of it, so I learned to sort of prioritise a lot but I think when parents first have the diagnosis they don’t realise that they have to do that. You know you need to make yourself a group of friends that are accepting of the situation, not friends that will judge you by it. You need to do the same with your family and that is the hardest thing, you know having to sort of, you are not going to hang around with your grandmother if she doesn’t get it all the time, which is a pity. So you isolate yourself if you don’t consciously go and make that effort of meeting other parents and I think when parents are in all this mess how can they think of on top of that go and make friends you know, may be because I am social… I am very Latin, so the Latin side of me is saying, no, no, no, you won’t give it up. So I go and do courses, I go to support groups and you know, but I know a lot of parents that are isolated because they are drained you know they feel they can’t go out. So yes… it is hard.