Helen: Interview 03

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Helen became concerned when her grandson watched Teletubbies over and over again but didnt pick...
Helen became concerned when her grandson watched Teletubbies over and over again but didnt pick...
Helen said that the multi-professional meeting she attended with her daughter was the most...
Helen said that the multi-professional meeting she attended with her daughter was the most...
And then he started to be assessed. I think that was driven through the GP in the end. And he had a battery of tests. He was tested by about eight different professionals, and it was November 2005, about 7th November, and my daughter and her husband were summoned to a multi-professionals meeting and they asked me if I would go too, because I had got knowledge of the special needs department of the of the local authority and I knew quite a lot about what might happen. And I said, to them, well I was quite clear that it was their meeting. That I would only intervene if I thought that I could add anything. I was clear that they were the parents, I was only the grandmother, but I did have rather particular knowledge.
Helen was concerned about her younger grandchild who was one when his brother was diagnosed.
Helen was concerned about her younger grandchild who was one when his brother was diagnosed.
There was also then the concern my daughter had because her second child was not yet at the age the first one was when he was diagnosed. So she’s starting to look to see every little quirk he had. Is he, is he autistic? And then she had, she had wanted to have more children. So one of the issues that came up for them was, would they go ahead and have a third child? And they talked about it in the family and of course there were reasons not to and reasons to. And the reasons not to would be, well if it’s another boy there’s a high chance that he could be autistic. But that if it was a girl it would be a high chance that she wouldn’t be. And it would mean that sibling number two had got a normal sibling to live with, which longer term meant that sibling number two would not have all the burden of the disabled child falling on his shoulders. There would be two siblings to look after the older one should anything happen to mum and dad. So there was lots of reasons to and not to.
Helen has a lot of unanswered questions about autism but thinks that the MMR was the final straw...
Helen has a lot of unanswered questions about autism but thinks that the MMR was the final straw...
Helen is careful to stand by the decisions her daughter makes about her grandson.
Helen is careful to stand by the decisions her daughter makes about her grandson.
Helen adores her grandson and loves having cuddles with him.
Helen adores her grandson and loves having cuddles with him.
So in terms of my relationship with him. I adore him. I love having cuddles with him. I like going swimming with him. And we do crazy things in the pool together. I mean he’s all kitted out with lots of floats and things, because it’s, I think it’s a bit touch and go whether he’ll ever learn to swim on his own. But he loves swimming, and loves being in the water. He loves the freedom, and he can just go off on his own. He loves jumping in. But he’ll get into a routine where he jumps in, sploshes to the end of the pool, climbs up the ladder, comes out and he’ll do that repetitively, which is a very autistic thing to do. He has quite good receptive language. So he understands quite a lot of things of command. You say to him, “Go and get your shoes.” He’ll get his shoes. All sorts of things you can ask him to do and he’ll do them, and he understands, so I mean, he’s for me, one of the great mysteries.
Helens grandson makes it very clear if he doesnt want her in the room.
Helens grandson makes it very clear if he doesnt want her in the room.
So I like spending time with him because he’s interesting. But he can sometimes be very rejecting. He makes it quite clear what he wants and what he doesn’t and if, he loves music, so if we put music on and he doesn’t want you in the room, he makes it quite plain that you’re to get out. And I mean I don’t take that personally, I just find it quite funny really that he can just use his hand and push you out of the way. Go! It’s quite clear.
Helens daughter feels alone and in despair when she is out in public and people look at her...
Helens daughter feels alone and in despair when she is out in public and people look at her...
Helen and her family have embraced autism and have become very involved in local organisations,...
Helen and her family have embraced autism and have become very involved in local organisations,...
Helen would have liked the opportunity to share experiences when her grandson was first diagnosed.
Helen would have liked the opportunity to share experiences when her grandson was first diagnosed.
Helen would like health professionals to be more empathetic with parents, and not focus solely on...
Helen would like health professionals to be more empathetic with parents, and not focus solely on...
There is light at the end of the tunnel, its a different light from the one you were expecting.
There is light at the end of the tunnel, its a different light from the one you were expecting.
Helen feels strongly that the system needs to be challenged by parents and grandparents.
Helen feels strongly that the system needs to be challenged by parents and grandparents.
Helens daughter panics almost daily about the future.
Helens daughter panics almost daily about the future.
It didn’t mean we loved him any less, but it was just trying to imagine the future. And I know my daughter still panics almost daily about what does the future hold? Not while she’s around and capable. But I know that her absolute gut wrenching fear is whatever’s going to happen to him if anything happens to her and her husband? And I can’t imagine what that’s like living with that really. Although I live on the edge of that, it’s not my immediate problem. I won’t be here. When he’s say the age I am, I’ll be dead. I haven’t got to confront what’s going to happen to this little boy when he’s a man and he’s 50, 60 and 70. And they live a normal life expectancy. So there’s all of that.