Monday, 9 January 2017

The School Residential Trip

Last year we had a letter from the school about a residential trip  that is taking place in February. I threw the letter away, my first instincts were that this was not going to work for Lucy.

Then last week we had a call from the school and he spent over half hour talking about the trip and what it would involve, how it would benefit Lucy and that she had said at school that she wanted to go. I said we would think about it.

First I spoke to Lucy. I asked her if she wanted to go and she told me excitedly that there was going to be a disco on the last night. I asked her again, 'do you want to go then?' She said 'can I go to the party but not stay overnight?' I told her no, that's not possible. She cried. 'I don't want to go, I don't want to stay away from home.'

She has stayed away from home before, a few times actually. But she really doesn't want to stay away with the school.

I decided to take a close look at the place where they are going. I was told in the phone call about all the fantastic activities available. It sounds wonderful, but Lucy has a joint problem which means she is prone to dislocations. We have a medical letter outlining the types of activities she is able to do. Abseiling is out, so is the zipwire, she can't do the ropes and caving could be a problem as she may slip. She wouldn't be able to do orienteering as walking too far causes pain in her knees and ankles. We let her go on day trips which involve walking but at night we have to spend time massages her, medicating her and using wheat bags to help relieve her pain. I'd hate to think she was hurting like that and not having our treatment, and I know she wouldn't accept it off anyone else. Her stress would be unimaginable.

There are some activities she'd be able to do, archery, problem solving, the buggies and of course the last night disco. She probably would join in if the others were doing it. I'm sure she'd get something out of it.

We have been offered the chance to discuss exactly what she could do and what she couldn't. We have been told that she would have all the help she required and she wouldn't be forced to do anything she didn't really want to do or felt uncomfortable about.

We have been told that a lot of the children have trouble sleeping and that there will be staff available throughout the night for anyone who needs them.

We have been told that we could pick her up at any time if it wasn't working out, and that the place they are going is only an hour away on the motorway.

It's been a difficult decision to make and we have all been going around in circles.

If she went it would be an amazing opportunity for her, she would experience being away from home and not with any relative, she would hopefully forge new and closer friendships with her peers.

If she went she would experience a lot of anxiety, not be able to sleep, possible suffer from pain, and is at risk of getting seriously hurt. (she once dislocated her ankle and we have no idea how, and of course she dislocated her cervical spine which needed lots of major surgery to put right.)

We know we wrap her in cotton wool but it's still really raw for us the things she has been through and we know it could happen again, so yes, we are ultra careful with her.

Even if the school were really good and did exactly as they promised we are not sure that her anxiety would not spoil the experience anyway.

But, and there is one big but. What about her incontinence? She has always been fecal incontinent. We are still under the hospital, investigating possible reasons for this. (her next appointment is the day they go away on the school residential trip.) When she has an 'accident' she gets upset, angry, distressed and refuses help in getting cleaned up. She is also refusing to clean herself so we have to force her to come and get cleaned up. The whole situation is really awful and we have to deal with it on a daily basis. It's getting worse as she gets older, when she was younger she was ok with us cleaning her up. She is embarrassed about the whole thing and that's what causes her refusal for help.

She has had 'accidents' at school and they have called us to pick her up and we have taken her home and cleaned her. She has managed to seek help before the other kids have found out what has happened (apart from one time in her last school.) She gets help because she knows that we will pick her up and help her. If she is away with the school she will not seek help because she knows we won't be able to do it. She will not clean herself, she will not let anyone else clean her, the other kids will find out what has happened.

I suppose we could let her go and if she does soil herself go and collect her. But, this is generally a  daily occurrence and the trip is for 3 days.

So, our conclusion is to not allow her to go, it feels like the best option at this point.

She is only 11 so she will have many more opportunities like this I'm sure. We are trying so hard to get the incontinence under control and I have every hope that we will get there in the end. We can work on her anxiety too and hopefully an experience like a residential trip would be more workable.

As for her joint condition, maybe if she doesn't have any more serious problems for a while we will become more confident and allow her to do more stuff. We can't keep her wrapped in cotton wool forever.

So now I feel like a bad mum, I feel like I'm letting my daughter miss out.
Lucy, however, is happier knowing that she doesn't have to go, she is just anxious about what will happen to her while the other kids are away.

It's been a tough decision.

Three Flare ups and a Catheter Change and all in the first month of the year.

 My poor girl has really been through a lot this month. She has had three flare ups of severe diarrhoea . One attack was pretty awful I was ...