Talking Sense - Volume 45, Nos 3+4, Autumn/Winter 1999
Sue: One of the things I find really difficult is in sharing out my time with everyone in the family. Do you find that?
Hannah: Yes, that really true. When my second child Joachim was born he cried a lot and needed lots of attention. I didn't know which child to go to, not to mention my own needs and my husband David's needs. I just felt pulled in hundreds of different directions...
Sue: Yes, and you feel that you give everyone a little bit but no one enough. I felt that it was very hard on my other children. When Ben required a lot of attention I felt like there were days when I hardly spoke to Daniel, and he was still very young. I still feel guilty about that. Speaking to them as adults now, they say that they didn't see it as a problem. I was speaking to my other son Matthew the other day, and I asked what it was like for him as a child - had it been awful? And he said, no, he just accepted it like it was. In fact, they were quite sensitive to Ben and Luke's disabilities. Matthew sometimes tried to screw his eyes up and block his ears to try to understand what it is like to be deafblind. He said that he sometimes felt really sad to try and understand what that must be like.
Now, as adults, they say that they think they were actually advantaged by this experience. They say that it puts their worries into perspective. They don't worry if their children aren't going to be the best in the class, because they know there are bigger things to worry about. They also say that it has helped them to get on with people, to be tolerant of other people's foibles.
Hannah: How did you find that your friends reacted to Ben? We found that our social life was totally disrupted; our friends didn't really understand and some of their comments could be very hurtful, although I realise now mostly it was just ignorance. I found that the best help came from other mothers in the same situation.
Sue: Yes, I found out that it sorted out our true friends who accepted us for who we were. I do understand why some couldn't cope because Ben was very disruptive then. Some people almost seem to feel that they can 'catch' the disability like an illness. Did you feel that you've had enough support generally?
Hannah: Well, luckily our consultant knew about a Sense CHARGE family day, and although it seemed like very early days, we said ok we'll try it out. You know we were still trying to deal with and accept all your pain and frustration, because a child with CHARGE has so many things to cope with. But we just thought that at the end of the day he has all these problems but he's still a gorgeous baby.
Sue: I think that's such a lovely attitude. We were asked, 'Your child has disabilities - do you want to put him away?' Our immediate reaction was that we didn't, but we went away feeling that they felt our child wasn't worth having. We were actually told to forget about him and have more children. He was one year old by then, part of the family - how could people think you can discard your child like that? I think that things have improved since then.
Hannah: Yes, I think that is true, but I still have heard a lot of horrendous stories. These things do still happen but thankfully far less. We were lucky living in this Borough because it has a very good pre-school team. A teacher for the deaf came in, who had experience of working with deaf children who had other disabilities. I was able to talk to her as the mother of a CHARGE child. She said, 'believe me things will get better' and gradually they did.
Sue That's really good, because that's just what I needed. I had no one to talk to about Ben. I used to cry and think, what is going to happen to Ben in the future? I had no one to give me some guidance, something to look forward to. I just thought that no one would love my children. And yet now, Ben is an incredibly popular person. I think, why did I worry? But then if I'd had the right early support and information things could have been a lot better.
Hannah: A big step forward for us was when we met David Brown from Sense's family centre when Joshua was six weeks old. We felt supported and he was so encouraging, saying, 'look your child is doing really well'. He visited Joshua at home, we went to Baling and it was so so good. I just told every one – do you know about Sense? Do you know about the Family Centre?
I am so aware how important it is to have early intervention. If you can get that right it builds a solid base for your later life.
Sue: That makes me think of one of my concerns when I was a young mother. Looking back, I can see that because I was always trying to do the right thing, I didn't actually enjoy my children enough. With my children with disabilities I was so concerned about doing stimulating things that I didn't often just enjoy them. Do you know what I mean?
Hannah: I've never thought of it like that, but a little while ago David Brown said 'you work so hard’ And I said 'well, I'm playing really hard', but really I suppose I am working hard.
Sue: I sometimes think, if only I could have relaxed a bit, and actually enjoyed them for the lovely children they are and not try so hard! But then I don't think I could have done it any other way.
Hannah: Yes, you learn as you go along. You learn about your children, you learn a lot about yourself; it's a learning process for everyone.
