Jill: Interview 04

When I realised that the problems were coming thick and fast, I think he was about getting on for five and a half, probably, maybe getting on for six and his little boy problems weren’t going away and in fact there seemed to be more of them, and I remember telling somebody about it, and it’s a bad habit of mine, I started really shaking like a leaf when I was talking about it. So I realised that it was, that it really mattered to me but it doesn’t seem like the end of the world. It’s not for me to say that, because it’s his life, not mine and I just hope to god he won’t have significant difficulties as he becomes a teenager and so on, into his manhood. But I most hope that he won’t have to feel that he has to be in any way isolated.  

What led up to my grandson’s diagnosis was... that... every day, when I went to pick him up from school, I’d be asked could you wait here and we just have to say something to you. So it was like being kept in after school myself, day after day. I would just dread it. There would always be some reason... that... my grandson had fallen or pushed somebody or bumped into somebody and caused them to fall. He ran across the playground in a zig-zag. He ran straight at mothers carrying tiny babies and caused them to stumble. I know myself. He still does it. He’ll run at somebody in the street who has a walking stick or a zimmer-frame. He’ll run at other people too. It’s not that he picks out the people who are most vulnerable. But he doesn’t seem… he’ll run at somebody pushing a baby in a buggy. He doesn’t... understand that people are not smoke that will... part when he touches them. He seems to be very amazed at being about to touch something or somebody and... and feel them with his fingertips. And he...  he loves to pick things up in the street, sticks, stones, conkers, pebbles. I think that’s just any seven year-old, not, not an autistic spectrum seven year old. But the thing that he will do with them, which isn’t so ordinary is to wipe them across his mouth and or he’s doing it with bus tickets at the moment, which I try to stop him doing. I explained that they’ve been on the floor and they’ll have germs on them. And he understands this intellectually but he just likes to do it. 

And you say to him afterwards, “look you were nearly run over.” Well in my case you scream at him afterwards because I’m not that calm all the time. So I scream. “You nearly lost your life.” And he, sort of, and answerably he says, “But I didn’t. I was okay.” And to him that’s logic and, again that could just be a seven year old, but I think it’s him and I think it’s the kind of thing that the school noticed, and that’s why they called in the educational psychologist.

But he when he’s out it seems to be that his brain really does get overload with what most people would find an average, ordinary stimulus and plus he can’t take instructions, which I found from my reading is fairly typical of one type of autism. It’s not that he’s stupid, I would say that wouldn’t I, but he does not seem to hear, or take in or retain what you’ve said if it’s an instruction. Now that sounds really weird. It sounds like a grandparent’s excuse.

On buses and trains there’s this kind of thing also this kind of, fierce... pushing out or punching out and he won’t sit and look out of the window. His sight is good. He can see far, but he has double vision. He has occasional bouts of double vision. But... he doesn’t find it interesting to look at what’s passing outside the window. Instead, he’ll stick his leg or his arm out into the aisle, because he finds it, I think he thinks it’s an interaction with other people, when they trip or stumble against him. And if they’re angry with him, it doesn’t seem to register with him. It doesn’t matter to him. And again he’ll stand up in his seat and he’ll lean his elbows and his arms on the head of the person in front of him. And again I think he just like the contact. And as often as I’m sorry I’m shaking, because I don’t often get a chance to talk about him. 

But deeper friendships are very difficult and have to be nurtured. And are quite fragile and fall apart because there’s so little in common. And so, I’d say that as I get older and as he gets older our relationship is going to be more difficult. He’s going to have to be more tolerant of me, because I’m not a young pretty mummy. I’ll get slower... I mean when you think about the drawbacks that are coming on down the line, they’re fairly obviously, they’re quite banal really, but and they don’t cause me much angst, you know, I’m quite vigorous and as I say, I’m quite bossy. So [laughs] and I know that he and I get on okay really, but there’s just more to be aware of because I’m a grandmother that he’s living with and there’s more to be aware of, because he’s autism spectrum to be aware of. So there’s a lot of hard work going on, sort of behind the scenes. I have to put myself in his shoes as much as I possibly can in order to make sure that there’s not some obvious thing that I should be doing that he’s losing out on and I might look back on it later and say, “Oh why didn’t I think of that at the time.” You know, in order to help him.

And [um] have you tried to find out information about autism? 

No. I haven’t. Because... again this is an old lady kind of a thing to say, and I may well be absolutely up the creek and wrong, but I find the more I research something, and I find now, I used to be a great researcher. I used to love finding out about subjects I was interested in or that were important to me, but I think I find now that the less you know about something the more you come to it with your heart open and you can come to it spontaneously because you’re coming to it fresh, and you form your own opinions of how to cope with it. And it’s lovely not to have to go by all the book stuff, you can just, if you’ve come to a conclusion, it’s lovely if you talk with other people and you hear their conclusions and theirs are fresh and alive and  no I’ve not tried to research it, not really, no.

I don’t worry because I’m a natural worrier, and if you’re a natural worrier and a natural pessimist, you learn to just live in the moment and be happy about what’s good at the moment. So no, I don’t worry about the future. The future can always turn out different, no matter what. But you do have to be aware that the future can let you down and so you have to... I keep talking about these inner resources, but I do think that inner resources are your best shield. It’s better than planning to just know that you’ve got a few ways of being happy inexpensively, ways of being grounded, which after all doesn’t cost anything.