Juggling

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We have decided to try and slowly take Faith off the Lacosomide, to see if this makes any difference with the emotional/angry outburst we are seeing. At present we have only reduced it 0.5mls morning and night. I am so frightened about her seizures increasing though. We have seen such an improvement in the gap between gelastic and partial complex, I would hate her to get worse again, but at the moment I have just got to try something I feel quite desperate. I am ashamed to say, at times I struggle being around her and find myself crying as I type this actually admitting it outside my family. I love her so much but it is such a strain on us all when she is crying or whining or screaming in your face threatening to hurt you all the time. Then as though someone has pressed a button on her back she will be back to ‘Faith’ again. Her one to one has said, it is definitely creeping into school as well and she can be quite moody with her friends and totally take out of context something they have said or done. But to Faith it will mean they don’t want to be around her and she will turn her back on them and strop. I find it such a struggle coping with her moods and dealing with the two older girls as well. The eldest has just started year 10 of secondary school, so the year before GCSE’s start and needs lots of support. She has had a nightmare with options in school, which has only just started back this week. Already I have had to go to school to try and sort things out for her. Faith can’t cope with us talking around her about things; she will become quite agitated and scream and shout at us. So trying to sort things out at home for the other two, becomes an uphill battle, even if I deliberately devote my time to her initially when she comes home and set her up with an activity so I can talk to the older two or help them with homework. It will work for about 10min and then she’ll start: ‘No one loves me’, ‘ok then you all leave me’, ‘I’ll just go away’. And on and on she’ll go. I try so hard to be consistent and give direction and talk to her the same way each time. But I’m finding that I’m becoming so tired that I more than likely lately just give in to her. And I know this is the wrong thing to do. I’ve noticed lately it’s not only the anger but that at times she becomes quite irrational and hysterical over something. She brought a DVD home from school last night that her previous teacher had kindly done for all the children of their time in the class last year. We explained to Faith what it was and Katie (the eldest) offered to put it on for her, but unfortunately it would not play on the Xbox so Katie put it in her computer. Well as soon as it started, Faith became hysterical, screaming and shouting, ‘turn off turn it off’. We tried to explain, but she wouldn’t hear it and screamed while trying to grab the computer. She ran back and forth to the Xbox still crying and screaming hysterically. It took us a good 30min to calm her down even after we had taken it out of the computer. When she had it in her hand she just hugged it and ran into her room. I know she is by no means autistic but at times like this I do see some autistic tendencies. I just hope we start to see some improvement with this decrease, but realistically I’m not expecting anything great.    

Faith 9-11-2012