A-Z

Jill: Interview 04

Age at interview: 69
Brief Outline: Jill has full-time care of her grandson who has been diagnosed with autism and semantic pragmatic disorder.
Background: Jill has one daughter and a grandson. She is a retired journalist. Ethnicity/nationality: White British.

More about me...

Jill has full-time care of her only grandson who she describes as “bright, good-natured and sweet-tempered”. He was diagnosed with autism and semantic pragmatic disorder after his behaviour caused concern at school. 
 
Jill and her grandson have to rely on public transport to travel. As she only receives a State pension and not a carer’s allowance, funding travel is expensive. She feels his future potential and opportunities are becoming more restricted because the cost of buses and taxis is limiting his ability to get around. 
 
She explains how he is not aware of danger and, as a result, she has to “be on the alert and aware” all the time. She would like to find a professional to work with him and to teach him how to “walk without zigzagging” and how to behave on the street and on public transport. She worries he does not take her advice about dangers seriously. She explains that she is bossy about lots of things and so he may not be able to distinguish serious advice or warnings from more trivial ones.
 
Jill is very happy being a carer-grandmother and doesn’t begrudge giving up her previous lifestyle. She describes her experience with her grandson as “very broadening” and feels she is “getting something extra with a lovely little boy”.
 
 

Jill realised how concerned she was about her grandson when she told someone about him and...

Jill realised how concerned she was about her grandson when she told someone about him and...

SHOW TEXT VERSION
PRINT TRANSCRIPT

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.  

 

Jill dreaded picking up her grandson from school every day because he was always kept behind for...

Jill dreaded picking up her grandson from school every day because he was always kept behind for...

SHOW TEXT VERSION
PRINT TRANSCRIPT

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.

 

 

 

Jill sees her role as making sure that her grandson has extra resources up his sleeve so he is...

Jill sees her role as making sure that her grandson has extra resources up his sleeve so he is...

SHOW TEXT VERSION
PRINT TRANSCRIPT
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, 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.
 
I feel that part of my role is I must fit him for life with her. If I got knocked over by the bus or became old and frail or something... I would like to know that he’d already been given quite a few inner resources. So that he could help to look after his mother, rather than just the other way around. Even if he, you know, were still a child when he had to do without me.
 
Obviously this is what any parent or grandparent wants for the child in their family who is a little bit more vulnerable. You just are all the time thinking how can I make sure that they’ve got these extra resources up their sleeve so that they are not too helpless, especially if I’m not around.
 
Can you explain what those resources are in more detail?
 
I suppose I’ll just list them. He’s got to be able to... learn to get himself on and off a bus or train. He’s got to be able to use a mobile phone. He’s got to be able to be handy with a computer. He’s got to be able to say please and thank you and sorry. He’s got to be able to, now this a difficult one. He’s got to be able to put himself in other people’s shoes and know what other people want. For him that seems to be extra difficult.
 
He’s got to be able to... be aware of danger. He’s got to be able to at least mimic and understand what ordinary behaviour is. I mean we all learn that. And he’s got to be able to, this will sound a bit peculiar, he’s got to be able to pass himself off as, as ordinary as possible even if it’s somehow acting, even if it’s not normal for him or even if it’s an effort for him, he’s not got to go out and, and act weird. He’s got to be able to understand that he mustn’t act weird. Otherwise he’s going to be at risk in all sorts of ways.
 
I suppose that’s something very important to teach him. But maybe not, too much just yet, because I, because teaching somebody not to act weird means that you’re kind of telling them that they basically are weird. And that that’s not a message that I want him to have. So there’s a lot of kind of double-think and double-speak in store for us. But its early days yet and I want him to feel as happy and carefree as possible, while he, while he’s still just a little boy.
 
We didn’t do so many of the routine, ordinary, basic, grounded things that my parents did with me, and which I’m s
 

Jill’s grandson is easy to get along with and they have a “fairly normal grandma-child...

Jill’s grandson is easy to get along with and they have a “fairly normal grandma-child...

SHOW TEXT VERSION
PRINT TRANSCRIPT
I think because he’s not really very ill, he’s easy to get along with. I think it’s a fairly normal grandma-child relationship. I’m quite bossy, he’s quite bossy. We share the same sense of humour. 
 
We can lose our temper with each other, and we can both yell, and then it doesn’t seem to matter two minutes later, literally so that’s good. He’s quick to say he’s sorry if he’s really being naughty, as opposed to autistic. 
 
 

Jill’s grandson becomes overloaded with stimuli when he is out.

Jill’s grandson becomes overloaded with stimuli when he is out.

SHOW TEXT VERSION
PRINT TRANSCRIPT

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.

 

Jill describes some of the things her grandson does when he goes out in public.

Jill describes some of the things her grandson does when he goes out in public.

SHOW TEXT VERSION
PRINT TRANSCRIPT

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. 

 

Jill has arranged with her grandson to meet her in a particular place if they get separated from...

Jill has arranged with her grandson to meet her in a particular place if they get separated from...

SHOW TEXT VERSION
PRINT TRANSCRIPT
And I have to be on the alert and aware, and preferably calm the entire time. I can’t take my eyes off him at all. For one thing he may disappear, so I’ve got to know where he’s disappearing off to. And there’s many a time, obviously, that I lose the place in the bus queue and when our bus comes sometimes everybody else is in the queue in front of us again, and I can’t get on, and I have to wait another hour. That has happened.
 
I have to hunt for him, because we have arrangements, wherever we go anywhere, I have to say to him, “Now if we get separated from each other, we’ll meet so and so.” If we go to ASDA we get separated from each other we’ll meet each other at the bench behind the checkout. But this doesn’t work and he agrees and he understands. But this doesn’t work out in practise. 
 
And so that’s one reason I have to be alert all the time. Another is that I must stop him, if he’s got his foot on the wheel of the bus that is about to move off. Another is that if he picks up a conker or a pebble and skims it into the road which he knows not to do, and why. If they’re, he’ll immediately run into the road after it, and it won’t matter to him that there’s a lorry thundering towards him, and the driver has to slam on his brakes. 
 
 

Jill works much harder “behind the scenes” trying to put herself in the shoes of grandson in...

Jill works much harder “behind the scenes” trying to put herself in the shoes of grandson in...

SHOW TEXT VERSION
PRINT TRANSCRIPT

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.

 

Jill says that caring for someone with a mild autistic spectrum disorder involves hard work.

Jill says that caring for someone with a mild autistic spectrum disorder involves hard work.

SHOW TEXT VERSION
PRINT TRANSCRIPT
I wasn’t very nice just now about the state pension, but it’s wonderful to have, and it does free you up, but so in a way a grandmother is an ideal carer. But [3 sec pause] but [4 sec pause] professionals [2 sec pause] can be very glib about this thing – a danger to himself or others. They, they don’t understand that you really are working hard every minute, that, or every second really that you’re out with that person and I’ll just end with an example that I often think of. Which is that he, there’s a canal quite near here with a wall which is sort of the height of my grandson’s head. And he’ll do things at a split second with no warning, and he’ll jump over a wall at the side of the road and he’s, he’s twice, not just once, but twice, he’s been just about to jump over that wall into the canal, which is a long way below, and quite fast water. And I’ve managed to yell and then grab him. 
Now I explained to him. I lifted him up, I showed him the water and he hasn’t done it again on that side of the canal.  But low and behold on the same road, he’s gone and done it on the other side because to him, seeing the water meant nothing. Okay there’s water on that side, but although he’s seen it many a time from the bus, and I’ve pointed it out to him, he’s not understood that it’s the same thing.  
 
 

Jill likes to come to “come to it fresh and form my own opinions of how to cope with it all”...

Jill likes to come to “come to it fresh and form my own opinions of how to cope with it all”...

SHOW TEXT VERSION
PRINT TRANSCRIPT

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.

 

Jill didn’t take her grandson to the behavioural classes he was offered.

Jill didn’t take her grandson to the behavioural classes he was offered.

SHOW TEXT VERSION
PRINT TRANSCRIPT
We were offered something, I didn’t want... and he and I were supposed to go to behavioural classes. It may seem unkind of me to have deprived him of those but I think within his problem, I think he behaves beautifully, and I’m often told so. I know he’s a nice person. So I know my grandson is a nice person. And I know he doesn’t cause harm deliberately when he’s putting out his foot to trip people up or something. Maybe I should have let him have the behavioural classes, but something in me, okay, maybe it’s my problem, and maybe it was wrong of me, but I just felt it was unfair to label him as somebody who needs lessons on behaviour when he’s basically not badly behaved. And, I don’t want him to get the idea that somehow he is a badly behaved person. I don’t want him to… he says please and thank you and he’s kind and so on, quite naturally. I don’t want him to have to feel that he’s forcing himself to be good in inverted commas. And I want him to feel that the help he’s offered is appropriate help and I want us to be able to turn down some kinds of help. 
 
As he gets older it will be easier for me, because the onus won’t be on me. He’ll be able to say for himself, and I hope people will respect it when he’s offered things that he thinks are inappropriate, he’ll be able to say, “No. I don’t want that,” and I hope that’ll be okay. At the moment, we or I can get blamed for being uncooperative and not cooperating if I turn down certain help and support, but in some ways you’re offered too much.  
 
 

Jill would like a professional to teach her grandson how to travel on public transport.

Jill would like a professional to teach her grandson how to travel on public transport.

SHOW TEXT VERSION
PRINT TRANSCRIPT
What I really wanted. I started off asking the school for this, but they said they understood why I wanted it, but they didn’t have the resources to do it. What I really, really, really want, because my grandson’s problems are to do with movement and being out, and being in, putting himself in danger when he’s out. I’d like somebody who somehow was trained. I don’t know if my grandson, he can’t be the only person with this particular version of the problem. There are surely would be some kind of therapist who understood how to do what I want, and is maybe trained for it, but nobody has been able to find such person for us.
 
What we need is somebody who can show my grandson how to walk without zigzagging, without jumping over the nearest wall. To look before he jumps over a wall. To understand that if he turns round suddenly he may not, he should look first and see if there’s somebody there, so he’s not going to knock them over. I tried to show him these things, but I think by the very nature of the fact I’m the person he lives with and I’m the person who cooks him his meals and is bossy about all sorts of things like his socks and his jumpers and it’s difficult for him to pick out what he should... really... be listening to when I’m talking to him, and what is just oh grandma going on and on as usual.  And... so it would be wonderful to have a professional who by very nature of the fact that my grandson doesn’t know this person. The person is a neutral person who is a stranger. And so gets treated with that kind of respect that you treat a stranger with. Who can show him how to walk, how to turn, how to be in the street. How to be on public transport. It’s as simple as that, and so far we haven’t yet found something like that. How to not put your foot on the wheel of a bus that’s just about to go off, to drive off, you know.
 
 

Jill tries to live in the moment and not worry about the future.

Jill tries to live in the moment and not worry about the future.

SHOW TEXT VERSION
PRINT TRANSCRIPT

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.

Previous Page
Next Page