Family Story – Living with Learning Difficulties

Noticing the first signs

We were having a lot of problems with our daughter’s behaviour. She was hitting and biting us, she was angry all the time. Some days she was crying from the minute she woke up to the minute she went to bed. She was very jealous of her older sister spending any time with me and extremely spiteful to her. Her sister would go to her bedroom and lock the door so that she couldn’t get in, so she would break all of her stuff and drag things off shelves. We had slept with her in hospital and when we brought her home she was too unwell to be left alone, so we were having her laid out on the sofa with us until one of us went to bed, it felt like she was with us 24/7. To us this was quite normal because it had become normal. We were just existing and that was it really. You think ‘I can’t go on like this for ever’ but you don’t know that there is anything that you can do, or that you are allowed to say ‘she’s being horrible, I can’t cope with her, she ruining all of our lives and we don’t know what to do.’ 

Referral to community health services

The community Paediatrician asked how we felt about seeing a community nurse who deals with sleep and behaviour. To be perfectly honest we just thought ‘Oh yeah, just another person to see, add that to our long list of appointments!’ I wasn’t looking forward to having another department involved because so much of our time was spent in hospitals and with people coming to our home. I didn’t really know what we were going to and if it was going to be of any use. It was only once getting there that we thought ‘this is exactly what we need, this is perfect’. It wasn’t rushed, there were lots of questions, we got to know the nurse and I thought ‘I like her.’ She was funny, she wasn’t making light of our problems but she was making us feel good and I thought ‘I will enjoy you coming to our house, I’ll enjoy time spent with you, I’ll enjoy you meeting my daughter and giving us some help and suggestions’, and that’s what happened, that’s what started the ball rolling.

Further involvement

The appointment at home was about meeting our daughter and her sister and talking about what we wanted from the Nurse. We made a plan in order of what was going to be the best to achieve first. The sleep was never going to be an easy thing, so we thought ‘let’s start with the behaviour’ because the behaviour was the thing that was really draining us. With our daughter it’s like learnt behaviour, she learns behaviour and she’s like ‘well I have to do that because I get a reaction’. You want your child to behave in a certain way, and some people think shouting and bawling works but it actually does nothing, it’s the way you say it and the tone you use, if you stand firm they listen.

The Nurse talked to my eldest about things to try, and taught her how to be with her sister, find things that they could do together. They love singing, the nurse brought the girls together by using microphones and keyboards and we had this massive sing off, it was lovely. The nurse suggested letting our daughter go to sleep and then taking her to bed asleep. I said that I was really frightened she would get out of bed and I didn’t want her to hurt herself. The Occupational Therapist came out with the nurse one time and brought this fantastic mat, when she stepped on it made an irritating noise and told us that she was out of her bed. We’ve now got her going to bed awake, settling in bed and we come downstairs. We are still in bed with her overnight, but it’s on our terms. She goes to bed before us and goes to sleep so we have our whole evening. It was very simple really and she took to it like she was so ready. We did it bit by bit and by the time we saw the Nurse again we could say ‘we’ve done it’ and we felt really proud, she said we had done really well.

What happened next?

The nurse came out and said that she could see by the way we were dealing with our daughter and the way we were talking that we had a bit more confidence. We weren’t quite so low and there was a much greater feeling of calm within the house. We talked about everything we had achieved and that we were in a much better place, so we decided to close on the next visit. It was quite sad but the nurse did stress that just because we’d used the service once it didn’t mean that we couldn’t come back to it. I thought that was a really nice way to finish because so often when you’ve used a service you are not entitled to it again.

Then a lovely letter came with a picture of our nurse on it for my daughter saying how wonderful it was to meet her, and a letter to me and my husband saying everything that we had done, signed by the nurse. I felt quite sad because I knew it was the end but reading through and seeing everything we had done, the fact that we’d actually done that and could see it all written down. It doesn’t seem a lot at the time but it was quite a lot and we are still putting it all into practice, everything that we’ve done.

(Story details taken in 2011)

Download: Family Story - LD Transcript