3. Practical advice and tips for carers > Communication strategies

Communication strategies

8) How family and friends can help

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Question:

“Can I ask you a slightly different question?.” “How do your other family and friends help you?”

Pauline:

“Immediate family are brilliant”

Frank:

“Connor is brilliant.” “My boys were away on holiday and they are well organised and….” “If it’s done slowly and there’s no problem, there’s no…” “Because I am in a comfortable environment.”(hesitates) “When I’m in a comfortable environment with the right people as I was trying to explain earlier on.” “I’m comfortable and I can communicate quite easily and have a laugh.” “Connor won’t allow me to make a mistake verbally.” “I’ve, we’ve had conversations when we’ve been sitting or talking about something and Connor would just stop.” “Normally at night we done the dishes together so we’ve got communication every night.” “We do the dishes together and talk about his schooling, what’s been happening, blah, blah.” ”And if there’s something happens and I can’t understand, my brain’s not working again, He will stop the word and he’ll go, right.” “Com-un-i-cation.” “Say it after me com-un…and this is an eleven year old boy is teaching me!.” “But he will not just say the word.” “He will insist that I’ve to say it and it’s not good enough for me to go OK, that’s right.” “No, come on speak.” “Tell me the whole word.”

Pauline:

“He doesn’t do that as much now, it’s a lot better now, but he did do it at the beginning.”

Frank:

“And that’s how communication worked in our house by doing that, because Pauline started it that way.” “Now because I’m getting a wee bit blasé about some of the things that I think I can do, yeah, Pauline will just sit and go..” “If I’m having a, trying to say something about something.” “A TV programme or anything.” “Pauline will just sit and go.” “Exactly what you are doing, hand to the side.”

Pauline:

“Get on with it.”

Frank:

“Get on with it.” “Get on with it and a good percentage of the time by the time I’ve tried to remember the word that I wanted to say in the first place, which I can’t remember, so I’ll change it to another word.” “And I’ve come up with an idea of another word, I’ve then forgotten what the sentence was that I wanted the number or the name for.” “And that’s when I’ll go I’m gonna need you to help me.” “Why? You can remember it.” ”But I’m still gonna need a help to remember what I was going to say in the first place.”

Pauline:

“That’s when we’ll go back over it then sort of go through it and see what the word was that he was looking for.”

Frank:

“Especially when I…” “I foolishly made a mistake by trying to make a big worded sentence and I couldn’t get the word out.” “Could not communicate and…”

Pauline:

“Can you remember what the word was?”

Frank:

“No but Pauline decided this is the original, how dictionaries were constructed.” “By people coming up with their own words and…”

Pauline:

“It’s because we were having, we were messing around.” “I can’t remember why we were messing around but we were and he’d said something about me.” “ He wanted to say that I was manipulating him.” “Or I’d manipulated the situation and it came out as manapulated him.” “So we’ve decided that this is a new word.” “So we quite often now use it.” “Are you manapulating?” “We have no idea if this is a word, we’ve not bothered to look it up.” “But if it is a word , we now want it in the dictionary.”

Frank:

“So if you see that word in the dictionary you know where it was first.”(laughs)

Pauline:

“But it happens quite a lot.” “There are times when we go to say something and we do..” “To be quite honest we laugh an awful lot now.” “At first, there was a lot of tears, a lot of heartache and coming to terms with it was really hard.” “But basically, now we laugh an awful lot about it.” “Because it’s our way of dealing with it.” “If he’s gonna get it wrong, he’s gonna get it wrong.” “If it’s just between me, him and Connor and he gets it wrong, who really cares?” “We don’t care.” “If he’s got to talk to somebody in authority, yes it matters a little bit more, but tough.” “They can wait.” “Talking to me, yeah, I’ll laugh at him sometimes or yeah, if he’s going over and over something then yeah, I may have to give in and I may have to say it’s this word, say it.” “He’ll go right I know what it is.” “And then you really have to prompt him to go, you need to say the word because you need to get it into your head for the next time you are going to need it.” “And he’ll do that now, he wouldn’t at first but he will now.” “And then I think the more that you can sort of just keep having a go, if you like.” “having a go at him because sometimes he’ll go, switch off , I’m not playing” “I don’t want to know and becomes a child.” “He has a go at my kids for doing that but he is very good at doing that and very classic for himself to do it.” “I don’t want to do it, I’m not playing” “Normally the stuff he gets from the hospital.” “the speech therapy stuff, he’ll look at some of that and say I’m not doing that.” “It’s babyish.” “I’m not a baby. And it’s like, well you still need to do it” “Because it’s repetitive and you have to do it so that’s how…”

Frank:

“And does it get done?”

Pauline:

“Yes, eventually.”

Frank:

“That’s as long as…” “Just in case some of the workers about here actually see it and they go he’s not been doing any of it.” “But I’m saying at this moment in time, I’ve been doing a lot of it.” “Maybe don’t like a lot of it but I, it gets done.”(laughs)

Question:

“What’s the best help that other people can give to you?”

Frank:

“How can they help?” “Time.”(pause) “Time.” “Listen to, maybe no listen to me but listen to what I’m trying to say and communicate slowly.” “Allow other people to communicate slowly.” “Be aware.” “They have to.” “It’s a horrible thing that’s happened and it’s very difficult to communicate.”


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